My Story of Chronic Tailbone Pain and Endometriosis

My Story of Chronic Tailbone Pain and Endometriosis
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Ever since my childhood, pain has been a constant companion that few seemed to be able to explain.

When I was 6, I suffered from stomach cramps. My pediatrician reckoned they were probably due to me being an over-emotional kid. Then, after my first period, I spent my teens in excruciating pain. Told they were “just bad periods,” I began taking strong doses of ibuprofen just to cope. 

By my late 20s, I thought I knew pain. Suffering? I basically had a postgraduate degree in it. Discomfort? I could write essays on the subject. However, the universe set out to prove me wrong, and a new kind of pain decided to join the party, originating from my tailbone. 

I was working in fashion when my tailbone decided to stage a coup.

I styled people, doing the same with the shop floor, as well as carrying mannequins and deciding what merchandise to dress the windows with. It was a physically demanding job, and I loved it dearly. But the pain, which started intermittently, began to get in the way. 

My tailbone had found its voice, and it did so by screaming at me. The rear end of my spine made its presence known each day with a sharp, pulsating pain. Eventually, I began to take time off work to have myriad tests done, including scans, ultrasounds, and countless X-rays. 

One doctor was certain the pain was in my head. Another thought it was scoliosis, pairing his diagnosis with the puzzling advice that I should eat more bacon. What felt like a world of professionals looked at images of me as I was literally stripped to the bone, yet they failed to offer a clear answer. A back specialist suggested spinal surgery to fix “whatever was wrong.”

Between each medical appointment, I went back to my job, feeling the pressure from my superiors on the back of my neck, and wanting desperately to do the job I so loved. Over time, my pain worsened, expanding to my hips and giving me what I jokingly called my “sexy limp.” 

I couldn’t sit. I walked with difficulty. Heartbreakingly, I gave up my job.

Finally, one of the scans showed a glimmer of hope in the shape of swelling around the sacrum. But all I got from having radioactive dye injected in me were more shrugged shoulders. My general practitioner was convinced I had fallen on my backside and possibly forgotten. Not only did no one seem to take my pain seriously, but also I felt mocked.

Two years later while living in Barcelona, and after losing yet another job, a massage therapist shed some light. He felt that doctors had wasted time fussing over my bones. He believed the root of my issues was somewhere within my deep tissue. I remembered him looking at me, a puzzle he desperately wanted to solve. The fact that he believed the severity of my pain and tried his best meant the world. 

Jarvis, the visual definition of “sitting uncomfortably.” (Photo by Jessie Madrigal)

Cut to five years later, and during a post-surgery appointment with my specialist, a plot twist: My sacrum was covered in adhesions.

I contacted my massage therapist in Spain. He told me that since he had last seen me, he had treated more women with similar complaints. He had read up on endometriosis and wondered whether that could have been the root of my pain.

In fact, a rare form of endometriosis called deeply infiltrating endometriosis affects the uterosacral ligaments. And where are these ligaments located? You guessed it — around the tailbone. 

While surgery helped with some symptoms, my tailbone pain never went away.

The pain flares up if I sit in the same position for a few hours, which makes long distant traveling a form of torture. Sometimes I can’t even explain why it awakes, and all I can do is lie down until my tailbone stops yelling at me. 

Yoga and Pilates have been lifesaving in terms of improving the mobility of my hips, but I am aware that my tailbone is a very expressive one, and will probably remain so for a very long time.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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14 comments

  1. Karla Bays says:

    What about a full hysterectomy? I keep seeing that as a solution to women’s pain. They can’t explain it but in many cases it takes away all the pain.

    • Thanks for your suggestion, but a hysterecomy won’t cure the disease. It has helped many patients, but in many other cases the pain has returned. For now, a hysterectomy is not something I want.

    • Anne says:

      My tailbone pain started AFTER the hysterectomy, after the endo grew back and infiltrated new places.

      Thank you for posting your story. I’m going through the same thing and it’s difficult navigating it with the medical community…

  2. Hi, all of this has been interesting but I still don’t understand how to or who can end this nightmare for me. I can barely use the restroom without coming out crying with pain. It is also difficult to walk around my house. My daughter and my husband has been doing everything around the house; thank God for them! Does anyone else have something together rid of this tailbone problem? I really don’t want to stay in bed all day in pain or try to walk for a very short time. I need help soon, very soon.

    • Brenda Wood says:

      Carolyn, have you had a dynamic sit/stand x-ray to see what your tailbone looks like in a sitting position? Normal xrays and MRIs are done lying down which will not show what your coccyx does when you sit. My sit/stand xray was very revealing and showed what the problem was. I’m still in the middle of my journey to find the solution for my particular problem but knowing the problem certainly helps! I only just found a specialist who has proved there is a mechanical problem in my tailbone and hasn’t just given me the “chronic pain central sensitization” label everyone else has given me because they couldn’t figure it out.

  3. Brenda Wood says:

    I have had chronic tailbone pain for 2 years and just this week was also diagnosed with deep severe endometriosis including scaring on the left uterosacral ligament. My spine specialist said “The high grade endometriosis you have does seem to involve the left uterosacral ligament. This is a ligament that attaches from the uterus to the sacrum (the bone above the coccyx). I believe this is a significant factor in your pain. It is probably a factor in the significant pelvic floor spasm you have and why your coccyx is not bending forward when you sit down, and then when you sit down without it bending, the bottom-most bone of the coccyx slips backwards.” I am on the list for surgery for the endometriosis and I was so hoping to read the surgery had helped your tailbone pain! I’m sorry to read it didn’t!

  4. Christy says:

    I am so glad I have found this thread. I had a partial hysterectomy in 2009 due to adenomyosis which is similar to endometriosis. Everything has been great until April 2020. My tailbone started hurting while sitting or laying down…. I did not fall or injure it in any way. I am a runner and consistently run 3-5 miles 4 times per week with no pain. When I sit or lay down, it hurts so bad that it literally brings tears to my eyes and takes my breath away. I have had an ultrasound, CT of pelvis, MRI of sacrum and a colonoscopy. Everything came back normal except for polyps removed during colonoscopy (which wouldn’t cause this pain). I also have had blood work done and I have elevated C-RP levels. I keep getting passed around from doctor to doctor. I’ve paid over $5000 out of pocket and I fell like everyone thinks I’m crazy. Any advice would be greatly appreciated.

  5. Gemma Mills says:

    This is so very interesting, and makes me feel not alone, and also that I am not going mad! I have had numerous laparoscopies, a TVH and left sided oophorectomy, a further laparoscopy and I am on the waiting list (for two years now, thanks Covid 🙁 ) to have a right sided oophorectomy. I am on Protstap monthly until my surgery – I did think I had originally been told this couldn’t be used for longer than six months though?

    The last year or so I have had increasing pain in my coccyx, along with pain in my hip, groin and down my thigh. I already thought I had endo on my bowel, and now I am adamant it is in my sacral ligaments and around my sciatic nerve. I am struggling to do my daily activities and the fatigue is horrendous. I am in so much trouble at work for absences, and for trying to ask for adjustments/a role switch to help me be able to work with minimal pain.

    As I said before – I am so pleased to learn that this isn’t just me (though I am sorry others are going through it all too)

  6. Pamela Frye says:

    I am so glad I found this post I have had tailbone pain for a few years now.. partial hysterectomy and many other surgeries and now the pain is back and worse and I am getting nothing but run around from all the doctors. What type of doctor do I see next? What type of doctor helped you the most ? This is really not easy to deal with at all and makes me feel very frustrated and sad along with the pain.

    • Hey Pamela, I am sorry you’re suffering from this. In my case, seeing an osteopath that knew about endometriosis helped a lot. We did some pelvic floor therapy and that gave me some relief. Physiotherapy can help too, but again, it’s about finding someone who understands the disease, and how it can limit our movements. I didn’t get much help from regular doctors to be honest… only from my specialist who removed some adhesions around that area. I hope you find what works for you x

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