9. Marjolein

Our guest in this episode is Marjolein.

Marjolein talks about her path as a patient suffering from tailbone pain and being in a lot of pain and with a lot of restrictions for many years, and where the path of finding adequate treatment led to strong desperation and even suicidal thoughts. Her tailbone problems made her inable to sit and work and in the end had serious implications for her career, sports and social life. In her search for help she often was left with nothing more then: 'we unfortunately cannot help you anymore'. In this episode you will get the expert view from the patients perspective. I think that a lot of people suffering from tailbone problems can relate to her story and can find recognition and comfort in her experiences.

The webpage linked to this episode is destuittherapeut.nl/podcast-marjolein. Here you can find more info about her and this episode. 

For more info about tailbone problems and the other episodes, you can find me at tailbonetherapist.com. 

If you have any questions about anything in and outside of this episode, comments or requests, please let me know by sending me an email though the website or at roel@roelwilbers.nl. 

Transcript

SPEAKER_00 0:04

Welcome to the Tailbone Podcast. My name is Roul, and as your host, I bring you only experts. This for most doctors and therapists' unknown problem. Let's dive in with today's episode. Today I'm gonna bring you a new expert. And where I normally have a live conversation with someone, this time I recorded this conversation already because the guest's English wasn't sufficient to do the podcast talk, so I interviewed her in Dutch, and here I'm gonna tell you all about our conversation. Again, a real person, a real expert. I'm only wanna give you real stories and real people, but just in a more indirect way. So Mariolein came to see me as a patient for tailbone problems, and that started three years before we first saw each other, and that's also three years ago. So she started suffering of tailbone problems six years ago, and at that time she was 36 and she had a lot of pain and restrictions. And here again I chose a patient that didn't have the easiest stories and problems. So, unlike the many success stories I also see where the problems are gone after one or two sessions, I'd like to bring you the people that have a more extended pain story and more extended problems, because they have a lot more to say about it. It's gonna be a boring and short podcast episode if someone tells me, Yeah, I had this problem for X amount of time and it was gone once, right? So before she saw me, she had quite a journey already, and we will go into that today. Magnane is a very interesting case, and therefore I'm very grateful and happy that she wanted to be in this podcast, and she said if I only can help one person with it, I'm already happy, so that's why I chose this different approach because I really want to share this story with you. When I asked her to further introduce herself, she mentioned she's married. She has two kids, one six-year-old and one eight-year-old, and she has a job in a school, and that changed because of her tailbone three years ago, before she worked in a supermarket, did more heavy physical work, and she was not able to do it anymore. She tries to do sports, but that is also influenced by her tailbone problems because now walking and swimming is the only things that actually are possible, and the other thing she stopped because of her tailbone problems. And she used to play tennis, and recently she tried tennis again for the first time, and that actually went pretty well. She was very happy with that. How that came across, of course, we're gonna dive into today. After that, we dove into how her problems started and when her problems started. And the real onset was probably during her pregnancy. She was pregnant of her second child, and she gave birth to her first child one and a half years before, and then she already had pelvic problems. But the pelvic problems were more in the ligaments, more on the front side, how we see that more often with pregnancy-related problems, and not as much in the tailbone. She had to stop working for that, and she was at home unable to work for that for some time. And during the second pregnancy, the pelvic problems again occurred, and they were actually the primary problem. But when she did some research to prepare for this podcast interview, she looked into it and she saw that she abbed her husband already then that she felt her tailbone problem again. So the tailbone problem started during her pregnancy, but it was kind of overruled by the pregnancy-related problems she also had during the first one. About six months after the delivery of her second child, she noticed that the pelvic problems really went down and she had a pelvic physiotherapist for that. But the tailbone problems they worsened and they kind of took over. And it's around the period that she also started working again after being for a long time at home since actually her first pregnancy because of the present pelvic problems. So they went better, but suddenly there was this tailbone pain. There was not a real clear onset, but it probably started during the pregnancy. And looking back and looking at that situation, it very well could be that she started to move differently, compensate for her pelvic problems, maybe sit differently, where the pressure on tailbone increased. And of course, the dynamic in the whole pelvic area was not optimal already because she was suffering this pain in her pelvic area. So there's not a clear direct onset, but somewhere during the pregnancy, and probably the pregnancy, is the reason why she had problems. And those problems didn't go after labor, they actually got more. And when I asked her how these problems manifested and what she felt, she answered that there was kind of like a constant, nagging, burning pain in the tailbone area. And it was kind of constant the whole day through. So it didn't get a lot better by changing posture or poses. And she used a lot of pain medication, but it didn't really help her. And she said it was like on fire. And there's a few things which are kind of exceptional in this case because she mentioned that the pain actually only was excavated when she was doing physical activities, like pushing or lifting or those kind of things. And that was not really connected to the sitting. And normally you see that tailbone pain is connected to the sitting strain, like the weight is being put on the tailbone. But at this phase that she had with her problems, that wasn't really the case. It was more that she had problems with physical activity than with sitting. She was still able to pretty much sit, although the pain was pretty severe there as well, but that was kind of constant through the day. And normally we see this pain is more dependent or more related to the poses and the activities you do. So and there's with tailbone more often, classically at least, an on-off mechanism. As soon as pressure is on it, when you sit down, there's pain, and as soon as the pressure is off, like when people are standing or walking, then the tailbone pain also is less. So it was kind of special that she had this kind of different mechanism that seemed to be present with her tailbone pain. Then we continue the story to see how her path searching for help went. She was still in treatment with the pelvic physiotherapist back then because the pelvic pains were not resolved. The pelvic pains connected to the pregnancy. But they didn't really have a lot of attention for that because she asked for the reports from the treatments back then in 2020, and they couldn't really find that the tailbone problem was mentioned. But Marjolaine she remembered that she definitely mentioned it and she doesn't know really what happened, and they had a look at it, but she remembers that the message was mainly it is not really our expertise. We cannot do anything about this. And this is also again an indication that even the pelvic physiotherapist, at least the not specialized ones, don't have the education and the tools and the means to treat a tailbone problem mostly. And we already went deeper into that with the pelvic physiotherapist I already interviewed in previous episodes, but it's not directly part of their training, which is kind of special because if you would expect at least one profession to have that expertise, then it's the pelvic physiotherapist. So what she did, she went to the general practitioner, the doctor, and she talked about her problem, and the doctor wanted to refer her to the pain department in the hospital. And the reason why she wanted to refer her there is because she had a patient before that had an injection and that worked pretty well on her. So she had already a little bit of experience with tailbone problems, which is kind of exceptional because most doctors kind of either heard it and dismissed it as something we cannot really do anything about, or actually never really had or looked into tailbone problems. So they contacted the hospital, but the hospital didn't want to go directly to the pain department and first to the orthopedist. And she went there and the orthopedist he made pictures, x-rays, and they saw that the tailbone was a little bit more forward, but he also mainly focused on the pelvic joints and the lower back. There was nothing too much special that was visible there with the imagery, and he prescribed a stronger painkiller and said, Come back in two months. And this is a message also which I hear a lot from patients is that they're given painkillers and then say, Okay, contact me in the future. Which might be, I don't want to put these words into the mouths of the treating physicians, but this is also sometimes an excuse to say, okay, let's treat the symptom, let's give it some time, fingers crossed that the body solves this itself, and then hopefully the problem is gone and we don't have to really deal with it anymore. But that didn't happen. Actually, the doctor in the hospital examined the tailbone pretty roughly by pushing on it and really looking for the pain, which seems like a thorough examination, which is good of course, but also there often you see that there's a lack of expertise with tailbone problems because the tailbone is really sensitive to pressure. And with soft pressure, it's pretty easy to localize the tailbone pain, but with stronger pressure, you can really, really make it worse for patients. And this also happened with Marjolein. She mentioned that she had pain for many hours after this examination. And she actually went out of the office there and called her GP crying that she never wanted to see this doctor anymore because it so increased her problem. And to indicate where the tailbone pain normally is, just pointing and it would actually be enough. And I'm not sure what this doctor was looking for. But with tailbone problems, be careful with the touch if you're a practitioner, if you're a doctor, because this can really, really aggravate tailbone pain. So this gave her extra pain for many hours, and after that that resided again, but the original pain, of course, was still there. The hospital then agreed to actually go to the pain department and see if an injection would help. And this was already months afterwards, and she was already unable to work, so at home on sick leave. So she received this injection, and where normally this injection is, of course, to make the pain and problems less. What was already told to her is that the injection, normally the first few days and sometimes up to weeks, can aggravate the pain. And she had that, but there was a second thing that happened, but she wasn't really told or explained at least, is that there's a lot of hormones in this injection. There's mostly corticosteroid injections, which are hormones, and this gave a very strong reaction with her. And she pretty quickly developed strong depressive feelings and even called the hospital because she said, I'm turning suicidal because if these problems don't calm down, she literally said, I'm able to jump out of the window. And she was really off. And this increase in pain and this hormonal disbalance led to a very, very disruptive state. And this really impacted her. And she's also the first one that actually told me this, and I didn't actually realize, and I've also not read about it, that these injections actually can also disrupt your hormonal balance. And I think every female mainly knows that hormones have quite an influence on you. And maybe all men that live with these females also know what it is to be hormonally disrupted, right? So it has a very strong impact on you. And this is something to consider also if you're going for the injections and you have a hormonal sensitivity, to talk to the doctor about it because this is not commonly mentioned. And afterwards, I was talking to a few of my patients about this who also had injections, and they confirmed this as well. It's not that I didn't believe myuline, of course, but they confirmed that there was also a hormonal disbalance as a reaction to this injection, and the injections mainly are corticosteroids. So this is something to be aware of at least. Also, if you're considering injections or you're getting one, talk to your doctor because this is a side effect which can happen. And what I hear happens on a quite regular basis. And of course, often it's very well manageable. And Marjoleine is a pretty resilient, tough lady, but it can push you over a certain level, which can cause very different problems, which is of course also not good for recovery. She also mentioned that after a later injection, she had kind of the same disbalance, although they already tried to manage the hormonal level a little bit more with the dosage that they gave her. And it even became for her so severe that she was two days after the injection in the garden and she actually passed out. And an ambulance had to get her, and her husband said, Don't put her on the back because she had a tailbone issue, which of course you cannot feel when you're out, and it might have aggravated it. So it's not that every person gets this, just to be clear. But there are these hormonal influences and side effects, which is pretty important to know if you're very hormonally sensitive. And in her case, it was especially impactful because she had two young kids that she had to take care of, and she wasn't aware, so she couldn't really arrange things before already to make sure that if the hormones played up, that she was fine and had the time to focus on herself. So this was a very straining moment or period after this first injection and as well later. And what Marjolein also mentioned is that because you're already in pain and you're already kind of out of balance, this hits you extra hard. And as mentioned, this is not a normal thing that the doctors talk about beforehand, it seems, because also the other patients I had that had this kind of imbalance after the injection said they were not consulted for this before. And I don't know why that is. Maybe it's because it's normally not the case and a very limited amount of cases, but I think it's good to be aware. So back to the first injection. After the initial extra problems kind of went away, and that really lasted four or five weeks for her, she says, the tailbone problem fully dissolved. And that was for like ten months. She was fully problem free. Unfortunately that didn't last because after she had a meeting for work where she had to sit all day, which she was fully not used to, because she had a job in a supermarket where she was standing and walking a lot, she felt the tailbone again. And that kind of became worse and worse and worse, and it went back to the old level. So it was exactly the same pain again, exactly the same problem again. And the interesting thing here that there's a clear moment that it became worse again. And she put pressure on the tailbone and in a way that she was not used to. And you can kind of compare this maybe to like you have a sprained ankle, but then you don't use your ankle that much. And you don't do that until the moment that you actually have this sporting event from work or whatever, and you use it again and the problem comes back. So this might indicate that there was an underlying problem which was not solved because of the injection, but just the symptoms were numbed. The actual things that the tailbone is normally vulnerable for and can trigger the pain easily were not present. But when that comes back and the dysfunction which might be underlying in the movement is triggered again, then also the problem comes back. So, and also here the injection mainly is focused on the symptom, on the pain and the inflammation, and to get rid of that. But it doesn't really focus on an underlying biomechanical reason for the tailbone problem. In literature and amongst the experts, pretty much consensus that the biggest problem with tailbone pain is in a biomechanical area. So the movement of the tailbone or the lack of movement. And there the discussion is a little bit is it too much movement, which is in the literature after the research done by doctors, or is it actually a lack of movement in the neighboring joints, which is kind of more my impression, and a topic I talk about at the World Congress this year. But if there's a biomechanical problem, you cannot solve this with medication, and I think that kind of makes sense. So what happened with her is what happens in a lot of cases after injection, is that there's a temporary effect and the problems come back. Not in 100% of the cases, but in many cases you see a reoccurrence of the problems, because probably the underlying source or the underlying problem is not addressed by medication. Then she had the second injection, and this one didn't have any effect at all. That kind of was surprising, of course, after the effect of the first one. And within two months she got another ejection, which also didn't help. She had again the hormonal disbalance afterwards, and they gave her less hormones there, so that might have also influenced the effect of the injection, although I'm definitely not a doctor or an expert here. But it could also be that the lesser effect is because there was not really looked at the biomechanical component, which kind of triggered the problem again and was the problem in the first place. They also went for a nerve block where they kind of numbed the nerve or like temporary kind of paralyzed the nerve so the pain sensation is not transferred to the brain. But also that didn't have any effect, unfortunately. And after four injections, they said, Okay, sorry, we cannot help you anymore, and she was sent back to the doctor, to her GP. And to add to that, it is also not uncommon that the effect of the injections become less and less after the repeat injections. So, where the first injection can solve or relieve the problem for some time, what we often see, or what I often hear from patients and also what I read in the literature is that the injections that follow have a lesser effect and also a shorter effect, and at a certain moment no effect at all anymore. I don't really know why that is, but this is what we see in practice and is also mentioned in the literature. After the hospital couldn't help her anymore, she went into the more therapeutic care, and she still was with this pelvic therapist, and they actually did an internal treatment for the pelvic floor but also for the tailbone, and that seemed to have a little effect at relief for maybe a day, but afterwards the problems came back, and they tried this a few times and said, Okay, sorry, we cannot help you anymore. She visited an acupuncturist that also couldn't help her, unfortunately, and even visited the holistic therapist who did some energy work on her, but unfortunately, also there, no help, no relief. And she really searched and opened up for help and for therapies, but unfortunately there was no effect, and she was still in a lot of pain and restrictions. The pelvic therapist that were specialized in pelvic problems, and also the GP, then referred her to another clinic. And in the intake, they explained to Marjolein what they could do, and again it came down to injections, and they wanted to try a kind of different approach, but also again the injective approach. The first injection relieved again a little bit for her, and the second injection some months afterwards had no effect, and then the third injection actually changed something, but that was a kind of weird change because where up till then she had kind of a constant pain in the tailbone area, and she had more pain after every injection, where she was not able to sit or ride a bicycle, now that pain didn't go away anymore. So what happened is that the constant pain actually went away, and that of course was a very beneficial reaction, but it kind of turned to in what we normally regularly hear as a tailbone problem where the pain is provoked through certain specific postures or activities. So after seven injections and many therapists, there was a change and it became more of a kind of regular tailbone pain. But as she mentioned, she wasn't sure that this was what she preferred because of course it's very inconvenient to have a kind of list constant pain and a tailbone, but now she was functionally more restricted because she was not able to sit and bike. And again, remember she had two small kids. And here in Holland, a very important way of moving around is biking. And every patient recognized that the inability to sit has a really deep impact into daily life. It has a lot of consequences for, for instance, work, but also socially, right? If you're not able to sit, that means that you're socially also pretty restricted. You cannot go to a cinema, going for dinner, visiting friends, all these things are restricted. So she was not sure she was too happy with the change, but there was a change after this treatment in the clinic. Well, after that last injection where things changed, they were also not able to help her anymore. And she heard what she mentioned, having heard a lot of times. Sorry, we cannot help you anymore. There were no new options mentioned. So she was kind of left to herself. And I don't expect that to be ill will or bad intentions by the people that tried to help her, but just also a lack of knowledge that people don't know where to refer someone with tailbone problems. And she also didn't see really experts on the topic. And of course, the pelvic therapists are experts in the pelvic area, but as we already mentioned, they're not always trained in treating a tailbone. And although these people kind of knew what they were doing because they directly treated the tailbone, it didn't give a lot of relief. And I think it was also very indicative that the physiotherapist that also tried to help her told her, in the physiotherapy and manual therapy educations that I did, I learned that the tailbone is there and I learned the names of it and a little bit about anatomy, but I don't know what to do with it. I don't have any options there, which is very honest and also the case for most therapists, unfortunately. So she was back to herself and doing her own research, but she felt very disempowered. And she mentioned what I also see often in patients in this case, that this restlessness and insecurity really gets a hold of you. I mean in Marjoline's case, she already lost her job and had to change her career because of her problems. Her problems changed and no one really could explain why. So she was facing a new situation with restrictions, and there was no clarity about what was actually going on and what the future is gonna bring. And that leads to stress and more tension in the body, and that is actually also what the pelvic physiotherapist told her that she felt that there was so much tension in this tailbone area, which is in the pelvic floor, and this can be triggered because of the pain that is there, and you get this defense musculaire, this reflective muscular tension to protect, which actually in the long term kind of pulls more on the tailbone and can make it even worse. But also the tension there tends to increase with stress and restlessness, and this is of course the situation she was in. And what added to that is also the lack of understanding and support from her direct surroundings. Because, as she explained very insightfully, is that she had to cope with an invisible handicap. So people on the outside literally also said, I see you smiling, I see you sitting. So they didn't understand about her pain when she was really suffering. She actually was even invited to go for dinner parties and those kinds of things, although she was in intense pain and she wasn't really understood by the people around her, which also doesn't help to come into a stable situation for healing and really impacted her. And with tailbone pain, this is something I hear more often from patients. You're not walking on crutches, you don't have a cast which you have with a broken bone, you're not in a wheelchair. So it's kind of invisible that you have this intense pain, which can again really be really intense if you have to sit, which is a very normal way that people are around each other. And this can be very, very frustrating for the people that have to go through it, but are not understood by the people around them, which understandably cannot really imagine how painful it is. It's kind of the same as you want to explain to a man how it is to give birth, how painful labor is. If you didn't go through it yourself, and again, I'm also here not talking from experience but what I hear from my female friends, it's inexplainable until you really had it. So there's not a lot of blame towards people, but you can imagine it's kind of frustrating, and she also found herself in this frustrating spot where she didn't know what was going on, she didn't know where to get help, she didn't know her future perspective, and she was not finding a lot of support or understanding in her surroundings. And you can imagine this gives so much restlessness and tension inside of her body, which definitely also interferes with the healing process. And here she also mentioned the impact it had in a relationship, or the potential impact at least, that her husband every now and then said, Hey, it seems you're doing better because you're sitting, but she replied, Well, I'm in a lot of pain, but I'm not gonna mention this every time to you because then I just keep talking about pain. So at a certain moment you also get restricted in your communication towards your partner because you don't wanna talk about pain all the time only and seem that you're almost complaining. But the other side, you also want to have your partner informed so that he can support you. So this is kind of like a very difficult dynamic which she ended up in and where she was in a lot of pain and restriction, she was lying on a couch for a lot of the day because she couldn't sit, and she was mentally down because of all of the circumstances. So that's definitely not an easy situation to be in. But also no perspective on the future or hope. Because people could tell her what was going on and what options for help were there, because all the options that were offered to her she tried already and they were not effective. So she found herself in a situation with not a lot of perspective, and she was back to herself and doing her own research, which is something I hear a lot from people that consult me that they had to find me by themselves. And she had the lucky situation that she was helped by her husband a lot and supported by a physiotherapist and GP that really wanted to help her, and they helped her in doing this research, and in there she kind of also first learned that there was something like a surgery for tailbone pain from her GP. But she first wanted to explore different options because she also learned that the surgery is kind of a pretty impactful thing for tailbone problems, but that search was not very easy, and she recognizes the thing I heard from a lot of clients: it's hard to get quality info about tailbone problems. And the whole reason that you're listening to this podcast is because I started it because the high-quality info is so hard to find, and I wanted to create something for people to have access to it. My alignment on Google and then she found me and she made an appointment, and that is three years ago and three years after her problems started. And when I asked her if her consultation with me was any different than what she experienced before, she said that already through reading my extensive website and all the info and tips she found there, she already felt more understood, and that was without even meeting me yet. And that was a nice compliment, of course, to hear. What she also mentioned is that the thing that struck her most, and I didn't even realize until she told me now, is that I didn't invite her in and asked her to sit down when she was at practice for the first time. But I mentioned it was fine to stay upstanding if she preferred. She told me that that was for her an indication that she found someone that actually knows something about Tilburn problems. Because she mentioned this is not what normally is the case, and as with any other problems, people are invited in and to sit down. And also John Miles in the fourth episode, of course, mentioned this already. This simple little thing already gave her the confidence that she was at a good place, and having found someone that understands her, and of course I was very pleased to hear that. So we did the intake and I listened to her story, and it was pretty clear that she was in a lot of pain. She raised her pain 9 out of 10, and considered that she had already done two deliveries already as a mom. And after I got to know her a little bit better, she definitely is not someone with a low pain threshold. What I remember pretty clearly from the intake is how she explained her pain. She said, Whenever I sit down, it's like stepping with bare feet on a Lego block. And this is something I think everybody can refer to, and gives a very vivid description how it feels when you have tailbone pain and you sit down. She said that this was what she experienced every time she sat down on a chair. Later on, she also called it like having an injection in a wrong way, and that a needle touches something it isn't supposed to touch. Next to the pain in her tailbone and all her restrictions because of it, she also mentioned that she had to go to the toilet very often and she was unable to hold her urine for a long time. And she had this sensit tailbone problems. And this is also something we see a lot with tailbone pain, and also something we talked about when I interviewed the pelvic physios in the previous episodes. We often see that the pelvic floor is off. And the pelvic floor is this few layers of muscles on the bottom of the pelvis, and they are connected to everything that you could say where the pelvis is used as an exit or an entrance. So everything that has to do with toilet visits and sexual activities. The pelvic physios already found that she had a high tension of the pelvic floor, and this is often seen as a cause, but can also be the result of tailbone pain. And this led in her case to being unable to empty her bladder fully and therefore needed a lot of toilet visits. Often she said she had to go every 10 minutes. You can imagine this restricts you from leaving the house. So she had two different problems that came from the probably same cause and interfered with each other. So she found herself in a kind of catch-22. She was not able to walk a lot and go outside, which would be good for her tailbone pain, because this was in contrast with her urinary issues, and she wanted to stay at home as much as possible to be close to her toilet. And when you spend a lot of time inside the house, you automatically sit more, and that of course is bad for your tailbone again. So she was kind of stuck in this situation. So she came in with a lot of pain and restrictions, and we did the intake, and although the tailbone was pretty sensitive, I treated her without too much pain because the techniques are very subtle, and this is what I hear a lot of people that although their pains are pretty severe, the treatment is actually not that painful. On the way home after the treatment, she directly felt that the pain was less, and also at home again, she noticed that she could sit again without any problems. She mentioned that she was able to play a board game with her kids in the evening, and this is something she wasn't able to do for some time already. And after that first treatment, all of her problems diminished with around 80%, and it lasted for a few days before it started to build up again. After a few treatments, the pain was so much down that there was only pain when she was sitting slouched on a couch, but she was, for instance, able to sit again during dinner, which wasn't possible before. Also, her toilet issues were fully gone, and she was very happy with the result, of course. And she called me even a hero without a cape, and I welcomed that as a great way of saying how grateful she was. So it went pretty well, but the progress stagnated during time, and although I tried a few different approaches, she was still unable to sit on a couch or actually to work when the time after the treatment became longer. I referred her to a specialized clinic for further examination and treatment, and also here she experienced a difference being with experts. She said that the intake was much more elaborate and the pain spot was much more exactly located through the internal examination. They advised her in injection and specifically at the spot of the pain this time. So there's different approaches to injections. And often it is kind of in the area where they make a bath of medication around the tailbone, so not very specific. And the experts, what I learned at least talking to them, aim much more for the specific pain spot and really try to inject the medication as local as possible. So it's much more focused than what doctors with less experience normally do. She also mentioned that she had much more explanations and the injection itself was a lot less uncomfortable and painful than the seven injections she already had before. And also here it's probably an indication of how an expert approach is different from, of course, the well-meaning healthcare professionals that are not familiar with tilbone pain. Unfortunately, the injection didn't change too much, and the next nine months it kind of stayed the same. She had a different doctor when she came back into the clinic for another consultation, and another one that was specialized in this condition, and she got a new Turo examination. And the doctor was very honest, and she said she could give her a new injection, but because she had so many already, she didn't really expect it to help. But after the request of Marulain to try it one more time, because also she felt trust in this doctor, she had another injection and unfortunately also without any effect. After that, they advised her the only thing that was left, and that's the surgery where they removed the tailbone. And because the pain was again more than where we ended the treatment, she considered this last resort. And this backfall she had during the months was also because she started a new job where, of course, she had to stop her last one because of her tailbone pain, and in this new job she had to sit more. She gave it really some thoughts, but also recognized the impact of taking out the tailbone, and especially the month-long rehab, which, with having two young kids, is of course not very convenient. And just the moment when she decided she wanted to go for it and plan the surgery, she received an email from me checking in with her how it was and how the trajectory in the clinic went. This was kind of coincidental because she mentioned to her husband that she should maybe make an appointment with me again to see if I could help her from this point on again, and it was maybe something else possible. In the meanwhile, my therapy evolved again a bit because of the new techniques I developed and the increased experience in the year that we didn't see each other. And of course, I'm constantly learning and developing the therapy which I use with the hundred plus new cases I see every year. And this situation seemed meant to be, as she mentioned, because after the break we had with therapy and the new techniques I could apply, we managed to reduce the problem again. And even up to a level now that she doesn't have any sitting problems anymore. The only thing that is left is when she really slouches while sitting, or sitting on a very soft couch or on a beach chair, but she can sit upright without any problems. And sitting slouched or sometimes in a theater sitting in a difficult seat is kind of the only thing that is left. And she told me she's even able to go off a slide again. And her youngest child, that is now six years old, had never seen her mom being able to do that because she had the problems already when her kid was born. For Morjolaine it's now very livable, and she can work and function again. And of course, she didn't go for the surgery. As you can imagine, she's very happy with that, and I am super happy for her because she was really suffering and in a lot of pain, and all her searching for a solution finally paid off. We're still in the end part of the treatment trajectory and expanding the time between the treatments, and hopefully we can get rid of the last little bit of the problem as well. I also asked her how she experienced the manual mobilizations, the manual treatments that I did and also my colleagues apply. And she told me she was surprised by the minimal input of it. And that she actually sometimes doubted if I actually really did something for her because the mechanical impact is so minimal. And although the techniques are mild, she directly afterwards already felt the relief in sitting and being able to handle pressure on the tailbone. So she felt the effect. And it also struck her because she was used to the other therapist where the techniques were less subtle, and also how she compared it to massages where they sometimes really put in their fingers deep and pain seems to be a necessary component of the treatment to be effective. And she didn't find all of that with the manual mobilizations. And of course, another factor could be that I as a therapist am very experienced in this technique, so the more experience you get in something, the more subtler you can apply them. But in general, the techniques, the manual mobilizations, don't have to be big, they don't have to be strong, they don't have to be very impactful. There are, of course, impactful in effect, but the mechanical pressure you have to apply doesn't have to be that high. And Marjolein noticed, she said, this was different, but still so effective. And for this, again, like I mentioned before, all the credits go to my teachers who invented this technique and further developed it into this very specific subtle intervention for the tilm. Sometimes just a little change and the right input is all that is needed to solve a problem that is there for sometimes many years and gives a lot of pain and restrictions. And also here, Marjolein in this interview confirmed that from her own experience. I also asked her what she learned in her kind of career as a tailbone patient, and mainly also the things that she wished she had known at the start of her trajectory. And she answered that she wished she would have known that there were people that are actually specialized in this problem. That now she ended up quickly in the medical scene and the hospital with injections, and that this whole trajectory gave her so much pain and discomfort and suffering. And also because she was treated that she didn't really felt the urge to go on Google or to search for other answers because she was already with the people she thought that were the experts on this problem. And the only reason that she started searching was because her GP and her partner and a physiotherapist started to do that for her. And this is what I hear a lot, and it again makes sense, right? If you think you are there at the only place where you can be, and this is the information that people get, you don't start thinking about different approaches. And also if this healthcare professionals tell you that there's not too much to be done, and she mentioned that she had this several times after she had some therapy or even at the first visit, that they told her, sorry, we cannot help you, and there's not much to be done, that you actually start believing that. Because if even they don't know that there are options, they're probably not out there. She even shared that she was so desperate that she was considering contacting a newspaper or something, that they can maybe publish a story so that maybe people would read it and recognize a problem and maybe could help her or bring her in a certain direction. Because in a medical system it didn't seem to be that there were any solutions. And maybe even only that she would be able to talk to other people that also have this condition and kind of confirm that it's real and that you're not the only one out there and that you're not crazy, and that more people are suffering of this. So, as you understand, she felt alone and misunderstood. And this is what I hear from a lot of patients, unfortunately. And feeling like this is also not helping the healing process. It leads to insecurity and tension and stress because you don't know what to do, but something that impacts your life so severely, and this tension in your body, of course, costs energy, and all that energy cannot go to the area that needs it. But especially in the case of a tailbone problem, one of the areas that tenses up mostly and quickest and often intensely is the pelvic floor. And that directly pulls on the tailbone, so pull on an irritated area also doesn't help the recovery and can actually slow it down or even prevent it from happening. And again, I hope that this podcast helps with that people are informed, that they know that there's something to do, and also can find their path and know which healthcare professional they can choose, and mainly that there are experts out there. And this is also one of the reasons why Mayolang wanted to be in this podcast. Although she didn't speak English and we had to do it in another way, she wanted to share her story and bring across the message that there is help out there. And she said even if only one person is benefiting from this, the time and energy spent on it is already worth it. And of course I fully agree with that. And for this episode, she spent a lot of time researching her files, her trajectory, going for the x-rays and the MRIs which she had. She checked in with all the different therapists and locations she was to get the information as clear as possible, so she could tell her story as accurate as possible, and in this way really wanted to contribute to the mission that I'm on here, helping people. And of course, for her, also knowing how alone and desperate you can feel having this problem, and not having experts around you that can help and advise you. And that this is the case for a lot of people with tailbone pain has to do that tailbone pain is still a niche market. The group of patients that have tailbone pain is not too big, so that means less research and less attention to it. And the lack of research may be also influenced that one of the big sponsors of scientific research is the pharmaceutical industry. And I can imagine the interest is not too big for a topic where there's not a lot of interest and gain for them. So she mentioned that she'd rather have found an expert earlier on and didn't have to go through this whole trajectory, which led to a lot of pain and suffering and limitations, and even led her so far that she actually had suicidal thoughts every now and then because of the way this impacted her life and her physical and mental well-being. And of course, this is a pretty bad place to be for someone, and as I know Marjolaine, she's a very positive and active person that wants to look for possibilities and work on things. But even she got desperate at certain moments. And even up to a point that it led to suicidal thoughts, she shared. And she added to that that this is something that you don't even wish your biggest enemy. And another thing she mentioned and how little is known actually in the medical world, and of course also therapeutic world, is what she found out when she went to the specialized clinic where I referred her to. They wanted to make an MRI scan, which was done before. And when they looked at her old MRI imagery, the tailbone was not even on it. So it was made because of her tailbone pain, but they didn't actually make images of the tailbone itself. And this seems to be a very odd thing, but this happens more often. And I see and hear it on quite a regular basis. Which at first I didn't really believe that something like this could be the case, but this doesn't say anything about how well trained doctors are, and that they're not well willing, of course. But this is an indication on how little is known about the tailbone itself. And even where it is, it seems, and where they sound surreal that they make images for something and it's not even on there. I hear and read that this actually happens a lot. And Dr. Foy, who is an American specialist on tailbone pain, wrote in his book that he encounters this very, very often. So if you have images done of your tailbone, see if they're actually on there. And Dr. Foy recommends that you actually ask the doctor to point at the tailbone on the images when they review the images with you. So you're actually sure that it's on there. And Marjolein was so kind to share her MRI scans so you can see it for yourself on the webpage that I created for this episode. And also there, if you have tailbone pain and you have imagery like MRI or X-rays, you can compare it to that and see if the tailbone is actually on there. And the link to that webpage you can find in the show notes with this episode. And just to be sure, the pictures I share there are placed there with the consent of Marjolaine, of course. Which of course is really nice that she also wanted to help us there. My final question to her was what would she advise or want to tell people with tailbone pain that are listening right now to this episode of the podcast? With all the experience and knowledge she has about the subject. And her reply was to not just listen to what is told by people that are not experts on this topic, and to do your own research. And she shared here that she was worrying about the amount of painkillers that she was taking, and that was more than she was actually comfortable with. But she was advised that by doctors because that's from their willingness to help, the only thing they could offer to her, but she was afraid that it would make maybe her problem worse. Which is in line with what I think, because if you use painkillers to numb the pain, so the signal to tell you that something is going wrong or that you're overdoing the input for an injured area without actually noticing it, you can make it worse. And unfortunately that was not something that she was too well informed about or considered in her treatment in her experience. So consider that painkillers make the pain go away or decrease the pain at least, but they almost never work on the cause of the problem. They just suppress the symptom. And there can be consequences that you actually trigger something without knowing. And of course, that's outside of all the chemical input you have and all the side effects of that. And I think one of the strong things of the manual mobilizations that we do as specialized therapists is that we're actually trying to go for the underlying cause of the problem and not just the symptom. And this is an expertise which is mainly with therapists, of course, because the doctors are just not or less trained in this. And of course, they have other expertises. If you have a tumor or a fracture, they're of course the ones to visit. But unfortunately, our therapy is not that well known yet. And I explained in the last episode already why that is. And also why it is that a lot of therapy is aimed at the symptom or taking out the source of the pain and not on an underlying cause. And just to be clear, I'm not against the medical world, of course, and I'm also not against pain medication. But I think we have to think through what we're doing and where we're aiming at, and when it's smart to use. A therapeutic approach or the medical approach or medication. And I was very happy that Mariolaine also mentioned this as an expert of experience and brought it up. So we can share it here. He also mentioned with his last question that it's very important to take care of yourself. Clearly communicate with your surroundings what's going on and where your boundaries are. You need time to recover. And especially with something that is not that understood or seen, people often don't take that and go beyond the limits of what the body is capable of. And Majolaine did that as well, especially again with two young kids, where you kind of have to in a lot of cases. But she advises people to learn from the mistakes she made and really take time to recover. Take care of yourself and listen to the body when it tells you its limits are reached. So practically that meant in her case that she could have stopped working that much sooner, and also socially, she wouldn't have felt that obliged to participate in things that she actually knows she couldn't do. And feel that she's taking away the joy and fun for others because you cannot participate. There's a big difference between constantly complaining about your problems or informing people. And that last part is very important. Also for your surroundings to know how they can support you and help you. Because if you don't have this yourself, it's hard to imagine how it is to have tailbone pain and all the social consequences it has. So she wished that she would have listened to her body better, and because she didn't, that gave her a lot of extra pain and suffering. And she wished she wouldn't have done that. And she advises people with tailbone problems, and I think that goes for every kind of chronic pain you have, to really pay attention to that. And finally she added the advice that if you go to a doctor or therapist, bring someone along. Because if you're in a lot of pain and you are at such a consultation, you often miss a lot of things. And you want someone next to you that can also hear and understand the story and ask questions for you, and you can later talk to to see if you understood everything correctly. And to doctors maybe record it so people can listen to it afterwards. And this goes for a lot of people that have chronic pain, because if you're in pain, your survival instincts are on. And the newest parts of your brain, where you do the reasoning and the logical thinking, they work less. And this tuning of your nervous system can prevent you from understanding optimally what is best for you. So I think this is very valuable advice as well. And with that, we're gonna end this episode. So the setup was a little bit different. You didn't actually hear the person interviewed. I considered other options like live translations, but I think this was the best way to bring the message of Marjolein to you. And I hope it was helpful. And because she has such a clear and powerful story, I didn't want to withhold that from you just because of language boundaries. And I hope you, just as me, learned a lot from Marjolein, and as I often mentioned, my patients are my biggest teachers. And I hope also for you this was useful and you got things out of it which are beneficial for you. So a massive thank you to Marjolein for wanting to share her story, share her experiences, and her advice for all of you out there. If you have any questions related to this episode or outside of that, please let me know. Any comments, any feedback, everything is welcome. I love to hear from you. If this podcast benefits you, this is my biggest salary, always say this is what motivates me to keep doing these episodes. And like Marjolein said, if there's only one person out there that's helped by it, it's already worth it. So there will be a website related to this episode. You can find it in the show notes with additional information to this episode. And in this podcast now, with the episodes, we're moving more towards the medical field to the doctors to give also them a stage to explain what they do and how they see tailbone problems. So thank you for tuning in, and I wish you a very nice rest of your day wherever you are, and hopefully until the next episode.com.