It was after a spate of kidney infections that I started experiencing intimate pain, including a burning and stinging sensation on the skin around my vulva whenever I attempted to sleep with my partner or insert a tampon. I was a student at the time and the first move of the campus GP was to test me for chlamydia. Although this came back negative, I was tested for the same infection a further three times over the following months. Then I was sent to a sexual health clinic, despite the fact I had one long-term partner and my situation had not changed. Assumptions were being made about me, I felt, because I was a student, and I was embarrassed that neither my GP nor the clinic staff would believe I was having safe sex.
The all-party parliamentary group on women’s health (WHAPPG) reported this week that women are struggling to get diagnosed and treated for a variety of gynaecological health conditions; a survey of 2,600 women found that 40% of those with endometriosis, for instance – a not uncommon condition that affects about 2 million women – had to visit their GP 10 or more times before getting treatment. More than two-thirds of women received so little information from doctors that they felt they had to search for it online – and one in eight of those with endometriosis or fibroids had to wait between one and two years for a diagnosis. Many women were apparently left feeling they were “going mad” after visiting their doctor in considerable pain and being turned away. The chair of WHAAPG, Paula Sherriff MP, who was herself told she should “just put up with” the pain of endometriosis, has said she was shocked by some of the stories the group heard, adding: “I am sure this sort of thing would not happen if men had periods.”
As I struggled towards a diagnosis of my own chronic pain, it felt as though there were endless obstacles in my path. After all the tests for chlamydia, the next step was for the doctor to prescribe numbing lidocaine gels and steroid creams. When these failed to work I was referred to a gynaecologist at a nearby hospital. There I was made to take a further chlamydia test and was examined. When I discussed the possibility of a condition called vulvodynia, which I had researched myself, my gynaecologist Googled it. I was horrified that the professional looking after me didn’t even know about a condition consistent with my symptoms.
Vulvodynia causes burning pain due to hypersensitivity of nerves in the vulva, but there is no infection or visible damage to the skin. Despite the fact that all examinations by the GP and gynaecologist showed this, I was subjected to a biopsy. This would have been an unpleasant procedure at the best of times, and I felt staff were insensitive and rough with me. When I said I didn’t think the local anaesthetic had worked, as I still had sensation, she dismissed my concerns. While I lay there, crying and frightened, she chastised me: “Why are you crying? You shouldn’t be able to feel anything.”
As no treatments were successful, the GP referred me to a dermatologist at another hospital. This was despite the fact I had already had a biopsy which confirmed there was nothing external to be found. After this visit predictably revealed nothing new, I was sent to another gynaecologist. Finally, after four years, they gave me an official diagnosis. But unfortunately they didn’t have any solutions.
The GP then prescribed me a series of tricyclic antidepressants, which are sometimes used for treatment of chronic pain. I had never taken any psychoactive medication before, but these drugs were offered quite freely, so I did not anticipate any problems. In fact, though, I suffered serious side-effects from some of these, which made me feel very unwell. I resented the fact this had not been discussed with me in more detail, and that no other options had been suggested.
The GP referred me to a psychosexual clinic at yet another hospital. My frustration peaked here as the doctor focused on vaginismus, a condition where the muscles of the vagina seize up involuntarily, often due to psychological trauma. This was not the condition I had, but the doctor continued to bring it up and implied my problems were emotional rather than physical. Once again, I felt my description of my symptoms was being ignored. But, worse than this, it felt like my problems were being dismissed as the result of stress or hysteria, rather than something entirely physical.
This was already having a huge effect on my relationship and mental health, and I started to feel hopeless and ashamed, blaming myself for being “defective”. My partner and I had got married, and I stopped discussing my symptoms with him, and with my GP, and tried to ignore the damage the pain was doing to my marriage. My husband couldn’t bear causing me pain, and our sex life withered. I felt I was letting him down, and we both buried our emotions, failing to communicate.
I experienced pain every day, just taking a shower, or wearing certain clothes, and after a difficult couple of years I eventually went to a private pain clinic to see a specialist. His experience in the area, coupled with his optimism, was almost overwhelming at this stage. He immediately discussed several options, introducing me to the possibility of non-surgical procedures including radiofrequency therapy and physiotherapy. The pelvic physiotherapist I am now seeing has already found muscular issues relating to pelvic floor dysfunction, which we are working on. This is something the GP and gynaecologists had never mentioned to me.
Throughout my ordeal I was dismayed by the complete lack of knowledge of the healthcare professionals I was referred to. I felt my GP knew more about my condition than several of the “specialists”, even though I understand that this condition is not actually that uncommon. Some statistics suggest one in six women will suffer from vulvodynia at some point. Huge amounts of time – and NHS money – were wasted while I was reassessed for conditions that did not match the symptoms I was discussing with staff. I simply was not listened to. It is not easy to approach your GP with intimate problems; being constantly ignored as I tried to be forthcoming and honest was hurtful and upsetting.
It has now been eight years since the pain started. If I had been diagnosed earlier and offered the appropriate treatment that I am now paying for privately, those years would have been very different. My only option now is to try not to dwell on those lost, unhappy years.
