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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FernH1
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Hi Catness! So happy that you've got a good specialist - they're hard to find! I would say after 2/3 sessions I started to feel relief and was able to enjoy sex again. I haven't been for a few weeks and have been neglecting my postures a bit and I've noticed I'm tightening up again, so it's definitely worth sticking at it consistently for as long as you can. Good luck
Excellent report!. I'm so glad that you've found suitable answers even though it took a long time. Fortunately I was lucky enough to find my way to a physio relatively early on. It really is worth it. May it long continue to improve for you.
This is great news! I’m a big fan of women’s (and men’s) health physiotherapy. I’ve seen one privately myself which helped with the endometriosis and adenomyosis pain but did nothing for my IC. Pelvic floor physio is a very overlooked speciality in the nhs. My endometriosis specialist suggested I see one in 2015 and off I went to find one privately. I spent 3 months looking online, reading their biographies and patient reviews. I was happy with my choice and have used them for back pain and rehabilitation of the the back and core muscles. I’m going back to them for hip pain caused by osteoarthritis
Hi Alaine! I'm glad you have found a specialist you're happy with. It really isn't considered enough within the NHS, alot of Gynos don't know anything about it. Considering they specialize in women's' pelvic health this really is shocking. Most people have no idea that chiropractic and muscle physio can also benefit pelvic health. Thankfully there are more specialists now but unfortunately a lot of them are private and some people can't afford it. Hopefully with more awareness and us helping each other on forums like this we can get to a place where more women have solutions!
At long last, a success story!!!! I was beginning to lose hope as so many of us endure endless suffering with no answers and no positive outcomes!! I have endured chronic pain for more than twenty years, had multiple surgeries, tried multiple treatments, endless meds and way to many consultants!! I have bladder, bowel, abdominal and pelvic adhesions and was diagnosed with levator ani syndrome, which causes severe vaginal and rectal spasms to the point where I cannot sit on my bottom for more than a few mins. My bowel also doesn't work without a lot of intervention and treatment!! My Gp referred me to my specialist bladder and bowel physio (have been attending clinic for 3yrs ) who was the first professional to listen and ask how they could help!!! She performs abdominal visceral massage to ease adhesion pain and vaginal trigger point therapy which is painful but for one week my pain is not so intense and I can sit on my bottom like A normal person, a week of reduced pain is wonderful!!! My physio works alongside my gyneacologist and colorectal surgeons who perform botox injections into the same trigger points to relieve spasms, this is not a cure but pain is definitely reduced even if it is short lasting it works for me!!! I am realistic that I will always have chronic health problems and chronic pain but by not giving up I have finally got some relief with meds and a good medical team who care all on the NHS!!! For all who suffer never give up fighting never give up hope, we all deserve quality medical treatment, and some semblance of a normal life!!!!!!!
Hi there I stay in the West coast of scotland, was referred through my GP within the NHS Greater Glasgow and Clyde healthboard. We have a specialist bladder and bowel physiotherapist who initially supported me with bladder and bowel conditions. Through exploring various treatments such as accupuncture, biofeedback and massage we were able to identify which treatments were the most effective. My physio arranged various hospital tests, scans and X-Rays once all information gathered she refered me to my gynecologist and colorectal surgeons. The result is I now have a medical team working together performing various treatments to help me manage my chronic pain, and bladder and bowel conditions.They were all very honest in explaining that my conditions were inoperable as the risk of complications is too great, only in an emergency would they consider intervening. My physio has changed my life by going above and beyond to support me. These specialist physios are too few and underrated in what treatment they can offer. She is my guardian angel and has helped me with my confidence to live as full a life as is possible for me to live. For all my fellow sufferers please don't give up hope be brave ask questions challenge diagnosis and doctors and get the help that we all so deserve!!!
Thank you Skye22 for your reply. Will discuss with the Senior Consultant Physio I have contact with to see who does this therapy treatment on NHS in the North UK where I live.
Hi, I currently see an Osteopath in the North if England who does Manual Therapy external, but I have the name of a Physio who does Internal therapy to release those tight Muscles.. well done for posting this information for people looking in London in particular..
If I could just ask for another person on here who is looking for a Therapist in the London area, I will pass on you post information incase they miss it.
1. Does Dr Durtnall treat Men also with Pelvic pain from muscles in tension?
3. Did you have to have a Dr’s referral to see Dr Durtnall?
4. When after a while you started to be treated by a less senior Physiotherapist in the clinic could I ask their name also please?
2. I didn’t need a doctors referral with my private healthcare policy but some policies do require it before they’ll cover
3. I started seeing one of the female physios who specialises more in the vaginal therapy than the coccyx, however I believe she has left now and I’m moving to a different one, but most of the practitioners there are specialists in this field
Hi, I currently see an Osteopath in the North if England who does Manual Therapy external, but I have the name of a Physio who does Internal therapy to release those tight Muscles.. well done for posting this information for people looking in London in particular..
If I could just ask for another person on here who is looking for a Therapist in the London area, I will pass on you post information incase they miss it.
1. Does Dr Durtnall treat Men also with Pelvic pain from muscles in tension?
3. Did you have to have a Dr’s referral to see Dr Durtnall?
4. When after a while you started to be treated by a less senior Physiotherapist in the clinic could I ask their name also please?
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