Endometriosis or scoliosis relationship to tailbone pain? - now had surgery

Amanda - amandafe@sympatico.ca

Original posting, 2002-10-13

I have had pain on the tip on my tailbone when sitting or getting up from sitting for about 3 months now. I am a 24 year old female: no accident, no childbirth. My doctor did an x-ray and after seeing no abnormality recommended a donut pillow and anti-inflammatories that have helped somewhat, but I don't want to use them forever!

I do have endometriosis and have heard that there can be a relationship but have not been able to gain any information. I was also told at 16 that I had mild scoliosis and have heard that this can be related to tailbone pain too but cannot find info here either. If anyone can help with their experiences and information sources that would be great.

Amanda

Update, 2004-10-24

Winter 2003

I struggled through the days with a donut and NSAIDS for 6 months. Vioxx was giving me considerable intestinal grief daily. I decided I had to leave my desk job, which meant my husband and I had to relocate to another part of the province taking him away from a job he loved. Our whole lives changed and without work every day I became depressed. I stayed off my butt as much as possible since my GP told me this was the only way to cure the pain.

Summer 2003

I traded in my donuts for a wedge cushion I bought on the Internet. I tried naturopathic treatment with no luck. I saw a chiropractor 3x a week for 3 months. I had laser, Chinese and Japanese acupuncture and adjustments from head to toe including 1 internal adjustment (ick!). I had a Laparoscopy to investigate the possibility that my Endometriosis was causing the pain but the surgeon saw no evidence of this. He prescribed Bextra. While my conservative GP was on holidays my husband and I strategically made an appointment to see his fill in. He said I had a hockey stick coccyx and ordered a bone scan (normal), white blood cell scan (incomplete) and prescribed a week of Prednisone, which provided short-term relief. I demanded a referral to the pain clinic despite my GP's feeling that it wasn't warranted.

Fall 2003

A cortisone shot into the joint gave me increased pain for 1 week and then back to normal. The second cortisone shot went into the "area" and hurt like hell. I may have seen improvement for a day. Feeling I may never find relief, I broke down and bought 2 coccyx cut-out chairs- well worth the $. I had a normal CT scan and was told an MRI was too costly for my mild condition. Bextra was now causing intestinal upset and narcotics were prescribed which limited my ability to do anything so I lived with the side effects of Bextra instead.

Winter 2004

In desperation I was induced into chemical menopause via Lupron to "prove" that the Coccydynia wasn't caused by my Endometriosis. Upon confirmation, I was finally referred to an Orthopedic Surgeon who on April 1 2004 agreed coccygectomy was the only thing left to try. My supportive husband finally burns out and falls into depression himself.

June 15, 2004 "The Big Day"

I am terrified but everything goes as planned. The pain is worse than I expect. I am released from hospital 2 days later and ride 2 hours home in the back of a van. My surgeon tells me to do whatever I want that doesn't hurt and expect 6-12 weeks recovery and 3+ months for the pain to subside. My wound is already nearly healed.

July 1, 2004

The first 2 weeks were dreadful. Allergies to narcotics, severe pain, no showers and a depressed husband all made for an extremely unpleasant time and I literally stayed in bed except for using the toilet. Finally I was prescribed Hydromorph Contin, which worked well with no side effects. After 16 days in bed I rejoined the living and my husband presents me with the devastating news that he is not happy and may want to split up.

July 9 2004

My incision is nearly invisible. I try to walk every day and I have even been out for dinner (standing). I am off narcotics and taking only Bextra. I can't lie on my back but I can sit for a bit with my wedge cushion on top of my coccyx cut out chair. I can't believe I feel this good after 24 days and I feel very optimistic.

August 9 2004- 8 weeks post-op

I still need 40 mg of Bextra per day. I am going to physiotherapy and the gym. I go out for dinner regularly – sitting, no cushion- though on a soft chair it becomes uncomfortable quickly. I can drive for about 15 minutes with a folded pillow under my thighs and can ride in the passenger seat as long as needed just by shifting my weight. Working with a psychologist together and separately, my husband's depression is lifting. I think perhaps he felt guilty because he was angry that my coccydynia was holding him back. I think it can only get better from here.

September 23 2004- 14 weeks post-op

With Bextra +Pennsaid + Physio treatments I was able to return to school full time this month as scheduled. My husband has recovered right along with me and we are the happiest we've been since before we had ever heard the word Coccydynia. I can sit for a couple of hours on a firm surface. My overall condition now is similar before the surgery and my surgeon said to be patient- pain free days will come. I look forward to this with hesitant optimism.

October 4 2004- 16 weeks post-op

Yesterday I drove 2 hours and still had bum-power to go out for dinner on a hard chair. Things are getting better. I think I will cut back on physiotherapy to 2x per week. Twice this past week I have been asked by acquaintances if they could pass my name on to a friend who is considering coccygectomy. Isn't it funny that for 2 years I felt so alone but once you talk about it is amazing how many other people are suffering too. I feel great.

October 19 2004- 18 weeks post-op

Last week my pain increased and it seemed like I had stepped a month backward. I have had intermittent numbness in my feet since the surgery, which doctors interestingly say, has nothing to do with the surgery. As the pain increased, the numbness decreased. Anyway I "think" the relapse was temporary and I back on the road to recovery.

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