After years of countless hospital admissions, appointments, operations, every injection, pill, lotion and potion you can imagine… I relentlessly searched for a treatment for my pelvic pain.
I was diagnosed with Endometriosis ten years ago and due the number of operations I have had to remove Endometriosis, I developed residual nerve damage. After fully exhausting all available treatment options in the UK, I went to see a specialist team of pelvic pain doctors at the Hôtel-Dieu Nantes, France.
The specialist team of doctors that saw me in France over the course of two days were amazing! On day one of my visit to the hospital I spent time with a French Doctor, whose vast experience in the field was beyond impressive. He gave me an extensive physical examination, after reviewing my medical history and to my complete surprise… he was able to suggest a diagnosis immediately! I was diagnosed with Maigne Syndrome (Thoracolumbar Junction Syndrome) – it affects the nerves in my back that divert the pain down to my lower back and forward to my pelvis. Following a further examination by a team of eight French doctors, in a multi-disciplinary appointment the following day, this diagnosis was re-confirmed. The team of doctors recommended I saw a Chiropractor in the UK and if the pain did not subside, then I was able to return to Nantes and receive a nerve block in my spine, which is not available in the UK.
Due to the fact I also suffered with Endometriosis, the doctors in the multi-disciplinary appointment requested I return to Nantes for an MRI to determine if I had any active Endometriosis. As MRI’s are not used in the UK for detecting Endometriosis, it was incredible to be able to see what stage my Endometriosis was at, without having to have yet another investigative laparoscopy in the UK. Without the opportunity to receive treatment in France, I would still be in extreme debilitating pain.Even with the language barrier the doctors were incredible and made me feel extremely comfortable, I cannot speak highly enough of them! I hope this level of treatment is made available to more patients.
Jane is 44 and lives in Bournemouth. She has suffered from bladder pain for over 16 years.
The pain first started in 2000 and that was when I realised that something was wrong. I had a cycle of suffering from urine infections and thrush that never seemed to go away.
Whilst I was on holiday in New York I suffered a particularly bad urine infection and had lots of blood in my urine. I was rushed to the Emergency Room and given a strong antibiotic called ciprofloxacin. It really helped with the symptoms and the pain.
Back in the UK I was referred to a urologist who diagnosed me with interstitial cystitis. I was now suffering with constant pelvic pain and was shocked to hear there was not a lot they could do to help me.
I went on to see other gynaecologists, urogynaecologists and other urologists to get a different opinion as I couldn’t accept that this was something I just had to live with. I had a laparoscopy which didn’t spot anything and being so fed up I decided to also seek private medical treatment and underwent video urodynamics, an X-ray examination of the bladder. Again this didn’t come up with any obvious problem.
Certain things have helped such as avoiding wheat and gluten, avoiding caffeine, exercise, pilates and doing pelvic floor exercises. I am now on medication which is making sleeping easier at night however I still have constant pain and an overactive bladder which means I can go to the loo around 15 times a day.
The condition has severely affected my life and my marriage, in particular the physical aspect of my relationship. I feel like the condition has deprived me of my 30s and I am determined to keep pushing for further new treatments and ways to ensure my life isn’t further affected by it.
This is the story of my pelvic pain journey, from utter bewilderment to on-going recovery.
12 years ago I awoke from a routine pelvic floor repair with excruciating left sided vaginal pain. At the time I worked as a staff nurse on a gynaecology unit and so I reassured myself that this was normal. I continued to have the same sort of pain, as well as tingling, burning and sometimes numb sensations in my perineum and vulva but these occurred intermittently. This went on for the next 8 years and were brought on by certain activities such as cycling, aerobic exercise, sexual intercourse and the wearing of tight underwear. I was an avid cyclist as well as a gym fanatic, so I ignored my symptoms, especially as visits to my GP were fruitless as to the cause because everything ‘looked normal’ and swabs etc always came back negative.
Unfortunately about 4 ½ years ago my symptoms became much worse and were no longer intermittent. At their worst I was unable to sit without severe stabbing and burning pain and had to abandon wearing my beloved jeans, theses were replaced by skirts, underwear two sizes too big and tights with holes cut in the gusset due to the relentless burning sensation. I can only describe it as feeling like I had just given birth accompanied by feeling like I had something lodged in my vagina and, as if that wasn’t bad enough, the sensation of having hot oil poured on both buttocks. I saw a doctor at my local pain clinic who told me it was’ idiopathic nerve pain’ and that I may have it for the rest of my life. I was devastated. Fortunately I saw a different doctor who decided against doing the caudal nerve block that the first doctor had ordered, opting instead to perform a pudendal block after taking the time to discuss my symptoms prior to the procedure. I’m so thankful that he made that decision as I had complete resolution of my symptoms for two weeks. It was wonderful, and I almost forgot that I’d ever had the pain.
Sadly my symptoms returned. I was given the diagnosis of pudendal neuralgia in a five minute phone call from the original doctor I’d seen. When I asked what it was and how could I help myself the reply was blunt; “there’s nothing you can do, just go out and buy a coccyx cushion. We’ll get you in for another block”. Before I had chance to respond the phone was put down on me.
And so my internet search began. I read Information Standard certified information about pudendal neuralgia. Upon learning how rarely it is diagnosed I was also relieved that at last I was able to talk to other patients who understood just what I was going through. I could ask questions and find out who the experts were in dealing with this complex and frightening diagnosis. The very best piece of advice I was given was from a fellow sufferer. She said “have a plan, you can’t do nothing, just have a plan”. So that’s exactly what I did. I was determined to seek the best outcome possible. I couldn’t bear the prospect of living with the tortuous and embarrassing pain for potentially years.
Through the Pelvic Pain Support Network I found a specialist women’s health physio who was knowledgeable about PN and was proficient in manual therapy. So, with the help of my best friend we made the 3 hour round trip each week. It was worth every penny (finding NHS physio for PN remains frustratingly limited) and after some months my pain reduced from 7 out of 10 to a 3. This was through internal trigger point therapy and also the fact that she was an expert and I was able to share my fears and frustration. Sadly the second nerve block caused severe pain in my left buttock and after struggling to hold down my job I was forced to go off sick. I had hit a wall both physically and mentally. The physio had helped my symptoms but 8 months on, the pain remained. Now that I was unable to work I couldn’t afford it any longer.
So what next? Well I went to see two UK based specialists. The first one who I saw as an NHS referral despite being out of my area, told me I should go to Nantes (France) “where the experts are” but that the decompression surgery to release the pudendal nerve (he felt my symptoms were evidence that I was entrapped in the ligaments of my pelvis) would not remove the pain completely. I would have it “for life”. Disheartened I returned home to my children. I’m a single Mum with a mortgage and all of my three children pleaded with me “Go to France, you can’t do nothing Mum. The second specialist I saw asked me if I’d ever been sexually abused? I assume this was because my GP had written my mental health diagnosis in my referral. When I told him I hadn’t he said “well I think you have”. At this point I was so low that I was beyond caring. I cried whilst he did a third pudendal nerve block (ultrasound guided), and was told he felt I had “chronic pain that just happened to be in the pelvis”. I was told to increase my pregabalin and practice mindfulness. Oh, and again, after asking if I would ever be free of it was told yet again “people can live very fulfilled lives with this type of pain”. My friend and I began the 5 hour drive home with me weeping silent tears. It was beyond me how I could live a fulfilled life with burning, stabbing vulval and buttock pain every day for the rest of my life. Fortunately the consultant did agree to arrange a CT guided nerve block as this would be definitive.
I had tried everything to help myself, read many self help books, including ‘explain pain’ by Lorimer Mosely, downloaded and listened to countless self hypnosis and relaxation recordings, acupuncture, massage, TENS, special cushions, mindfulness, but essentially I knew deep down that the nerve was compressed. My symptoms had started to spread to the right side and I developed piriformis syndrome in both buttocks, a response to the nerve irritation. My personal life suffered immensely, I was unable to do things with my children, even cooking a meal was a struggle as standing for any length of time became intolerable. I was only able to drive short distances so much loved trips into the countryside became a thing of the past.
Whilst researching pudendal neuralgia I had read the team in Nantes, who pioneered the decompression surgery many years ago. I spoke to two women who had had the surgery there and having talked to them and read up on outcomes I knew what I needed to do. The CT guided block relieved my pain for several hours and so proved as much as is possible that I did have pudendal nerve entrapment.
At this point in my story I want to introduce my mad French friend. He had witnessed my struggle to get anywhere and this is where I know how truly blessed I am. One day he rang me and asked what was being done? I was unable to tell him as I burst into tears. I had spent a small fortune seeing these specialists privately and was surviving on sick pay. “But you must go to France” he said. As soon as I mentioned money he jumped in and insisted he would take care of it. At that point my fortunes changed. He and his girlfriend drove me to France (me laid down in the back of the car due to pain, listening to one of a huge selection of relaxation recordings (after all, the pain was also in my brain, I wanted to switch off my stress response, not easy under the circumstances)!
We sat in the hospital in front of one of the doctors I’d read about and was told “yes it is true, you do have PN and you need surgery”. After this news we sat in a cafe across the road and I burst into tears. My friend said “stop being silly, do you want to go through the rest of your life without meeting anyone/ without sex?” My response was to tell him I didn’t care if I never met a man again (because let’s face it, sex, when I had last had it, caused the most horrendous genital pain for weeks after. No sex ever sounded like heaven to me. Just as well I was single).
Three months later I managed to get funding from the NHS for surgery in Nantes. I was so unsure of my decision but again, my friend’s insistence and also a visit to another physio, confirmed my fear that the French doctors were right. This convinced me to go. My friend and his girlfriend drove me to France again. I had bilateral decompression surgery. My left pudendal nerve was badly damaged, the right side was less so, but both were entrapped in the ligaments. The surgeon reassured me I would make a full recovery and that this awful chapter in my life was over. I am happy to say I have improved hugely. The vulval pain is mostly gone and I can wear my beloved jeans again. I had 8 months off work, then returned. I work part time and meditate every day (I did the mindfulness for health course after the surgery, this time it helped enormously).
Best of all my eldest daughter engineered a blind date with her friends Dad who is also a single parent. I was reticent to say the least but now, a few years on, I am the happiest I’ve been in a long time, able to do more each day, have a future to look forward to, oh, and I can enjoy sex without pain = miracle, and have also remarried!
So I’d like to conclude by saying I’ve learned so much from this, my stress response is firmly switched off. Without the Pelvic Pain Support Network to provide support, information, advocacy, guidance and friendship I don’t think I would be here now. I’m so grateful to them and also glad to be in a position to be able to provide support to others after having been so supported myself.