As somebody who suffered for a long time misdiagnosed and misunderstood with various types of pelvic pain and dysfunction, I wanted to write this post in the hope that somebody experiencing the same might find a solution from my story.
I started about 2 years ago to experience urinary issues and pain during sex. I needed to pee all the time, my urethra felt uncomfortable, my vagina was stinging during sex, and I had lost normal sensation in my clitoris. Some days, my vulva felt so sensitive that it almost seemed swollen. After various visits to GPs and hospitals who assumed I had a UTI or an infection, I was prescribed round after round of different antibiotics. None of these worked (obviously. I spent Christmas in New York on a dream holiday I had been looking forward to all year, and couldn't spend longer than an hour away from a toilet, have sex with my partner, or have a drink because of the antibiotics. Over a period of a couple of months I spent about £100 on different medications or prescriptions, with no success. Myself and my partner had to be tested for STI's, which also came back negative.
I then visited a private Gynaecologist (because a referral would've taken months) who examined me (painfully) and saw no symptoms or indication that anything treatable was occurring. This cost me £250 and was a waste of time. I was then referred via my GP to a consultant Urologist who performed a Cystoscopy on me (a camera inserted into the urethra under anesthetic to look for bladder issues). This procedure and recovery was VERY painful and to make matters worse, they found no results indicating any problems internally. I was then put onto the 'interstitial cystitis' diet, cutting out all acidic foods in a hope that I would notice I had bladder allergies to certain foods. This also didn't make a difference and I was back to square one. I discharged myself from the Urologist and went back to the drawing board.
After months of researching online and reading forums like this, I finally was guided towards pelvic physiotherapy. I wasn't really sure how it could help me, but at this stage I was prepared to try anything. I asked my GP to refer me to a specialist pelvic physio unit in a London hospital. My referral took months and when I was finally seen, my follow up appointment was another few months away. It wasn't consistent enough treatment to make a real difference, although I was closer to figuring out the cause of my issue. The physio said that my pelvic floor was extremely hyper-tense, and as a result this was contracting my bladder, bowel, and causing nerve contractions in my sexual organs. I couldn't believe that muscle tension was the cause of all of my problems, no wonder none of the medications and procedures worked - if anything, the stress of not finding an answer made the tension worse! I was baffled to find out that muscle and spinal tension could effect my bladder, or my sexual organs.
Deciding that the NHS appointments weren't frequent enough, I went back to the internet to see if there were any private specialists who could help. I came across Dr Michael Durtnall of Sayer Clinics, who was one of the only Chiropractors in the country who specialized in pelvic tension and tailbone pain (which I had also started experiencing and didn't know why). Being private, and a leader in his field, he was expensive. I was lucky to have access to private healthcare through my employer, and thankfully they agreed to cover the cost. However I would have paid the money myself if I had to, as I was that desperate. For any of you considering visiting a private professional to help with this, I would say do it. Even if you can only afford one appointment, you'll learn more than multiple visits to NHS practitioners, most of whom aren't trained in this issue at all.
During my first visit to Dr Durtanall, he took x-rays of my pelvis - I wasn't sure why. He explained (after showing me my xrays) that my tailbone was out of alignment, as was my spine. This was putting pressure on my entire pelvic region and causing pain. This, coupled with the stress tension in the muscles, was the entire cause of my problems. He also reassured me that he could solve the issue with treatment - I almost cried and hugged him. FINALLY after nearly 2 years, somebody knew why I was in pain and what to do to stop it. Through a combination of internal manipulation, vaginal massage and other techniques, I slowly started to feel relief. I also noticed that just from the reassurance that somebody understood me, I was relaxing naturally. My bladder went back to normal and my sexual pain started to decrease.
I am now seeing one of the other physios in the clinic who is a bit cheaper and is focusing on releasing the tension in my vagina and coaching me on relaxation at home. It's a daily practice of relaxation of the body AND mind, but it's worth it to feel like a normal person again. I really hope that this story and my experience resonates with one of you and potentially guides you to a place where you can find some answers. Even if you feel this sounds familiar but can't access private care, at least knowing what your problem can be and perhaps trying some relaxation techniques at home (there are loads online) could maybe help.
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