My initial pain started 6 yrs ago. After thrush I was left with a sensitive area in the entrance to the vagina. Last year things got worse after sex, sensitivity increased and with high tone in the Levator Ani it felt I was sitting on bulkiness. All this was nothing compared to the last 6 mths when I started to get pain and increasing tightness in the rectum. Sitting is painful, stretching the are feels like all the tissues are stuck together. I'm waiting to see a physio at Calderdale hospital. Has anybody else had this tightness and has anybody found a knowledgeable physio with the nhs or other? I'm on Gabapentine but pacing it at mo. as I had nasty headaches and flu like symptoms at 600 mg a day. More or less stranded in the house which isn't helping me mentally. This is so hard..I have found doctors know very little
Any advice more than welcome.
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Nickolina
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Thanks saw the gynecologist last yr. He just called it Vulvodynia and said my muscles were high tone. I feel the muscles may have irritated the pudendal nerve causing further tightening and pain. I am looking for anybody who has felt these restrictions which extend in to buttocks too and if they have been able to find any relief. Thank you.
I can relate to shrinkage of vagina rt radiation. Very difficult getting started. I don't have intercourse on regular basis; just saw my gyn yesterday. Really tough going thru this, rad Therapy was in 2011. It's changed my pelvis, and everything in it.
I have symptoms very similar to yours. I was diagnosed with vulvodynia and later, pudendal neuralgia. It has been 8 years now, but only one year since I found a Physiotherapist who was able to help. After 6 months of physio and doing everything I had been advised (quite time consuming), I began to notice a little improvement. This was a private physio in London and I was travelling from NW England; very time consuming and expensive. I have recently found another physio (again private), much nearer to my home. She is very knowledgable and experienced and I am continuing to work toward further improvement. There are some signs that this will be possible, though I'm not sure about complete recovery. I have done so much reading and research over the years (as you do), and I've come to the conclusion that the name of the condition is irrelevant. Regardless of the cause, which might have remedied itself, the brain and body respond to pain by tightening the surround muscles. Keep that up for any length of time and you are left with a chronic condition. I do believe that Physiotherapy helps, but it is very important to keep up with any exercise regime advised, do anything that helps you to relax (meditation or abdominal breathing etc) and don't expect a quick fix. I hope this doesn't sound too off putting, because although I still have bad days, I no longer allow this condition to get me down and I do feel hopeful. If you have the opportunity for physio on the NHS you are fortunate. See how it goes. If this one can't help, then look elsewhere. I wish you luck.
I've had something very similar to you! I have had episodes of thrush and they left me with oversensitive skin which really turned into pain: stabbing, burning, itching, numbness, stinging... it's been over 3 years. I too have read everything on pelvic pain, in the years I've dealt with it.
I also experienced crazy tightening in my backside (a few months ago) but thought it might have been caused by a previous fall on my tailbone two years ago, pain that might have "woken up". I even have a muscle spasm that feels like a 'knot" in my left side of my backside, that comes back regularly.
In any case, I was "diagnosed" with vulvodynia and some other skin condition, and also some issue with the pudendal nerve including neuralgia.
I've been working with a physical therapist who almost completely helped with the pain in the tailbone and backside area in a few sessions. The "soft" tissue was just bunched up in a tight ball. Apparently I was "guarding" in that area.
I'm also seeing a Dr at a pain institute who is working with me on the pudendal nerve and pain issues. Getting nerve blocks and other medications to dial down the pain.
I would put out there for your awareness, that whatever you feel and have can come from different issues, physical, sometimes even psychological (fear of pain, so you start "guarding" that area and your muscles get stuck in a knot). I have several issues and really I needed a whole team including urologist, physical therapist, gynecologist, neurologist, counselor, etc. But the one Dr. knew about my conditions and recognized them separately regardless of the specialty and came up with a plan to address them.
Also, I was asked to do everything I can to relax, including think about starting meditation, relaxation sessions, breathing etc... The more relaxed you feel, the better you can handle the issues!
And no matter what, try to find a doctor who has experience with pelvic pain and can address it all. I've had to go through many doctors (who had no idea, or gave me a silly ointment and sent me home telling me I'd "feel better in 3 months" but I never did, or told me it was "just me") before I found a doctor who actually listened, who "got it" and was willing to put a name on things and approach everything with a serious game plan. Good luck to you!
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