I haven't written my story so far. I'll try to keep it short but it has been going on for years. To make it easier to read and to stop you falling asleep, I'll do it in two parts.
I started my periods at about age 13, they have always been very painful. I was put on the pill by my GP and given strong painkillers and told I would grow out of it. The pill helped with my periods but I still had some very bad ones. I had a cyst on my left ovary at age 17 which was operated on by a general Gynae. (I found this a very painful experience).
When I was 18, my periods were so painful that I had to stop using tampons and started using sanitary towels. At the end of each period I would have a sore vulva. I went to the doctors and they said nothing was wrong. This pattern carried on but then the pain was there when I tried to have sex (Pain was at the bottom of the opening of my vagina) this then caused Vaginismus, where the muscle would spasm. This was very distressing as I was so young and felt unable to talk to anybody. I continued to go to various doctors, different GUM Clinics. I was tested for everything but it all came back negative and I still was being told nothing was wrong – in fact it was said it was all in my head!! I left many buildings in tears due to misdiagnoses.
Aged 23, I made various visits to my GP and he finally sent me to the Gynaecology Department – they also said there was nothing wrong and told me to contact Relate Psycho-sexual councillors. Nobody asked me about my periods at this time and I had no idea that the amount of pain I was suffering with them wasn’t normal.
I was finally diagnosed with vestibulitus when I was 26. I was given anti-histamine and lidocaine to help with the pain and trainers to overcome the vaginismus and then went into psycho-sexual counselling (Sensate focus). After trying anti-histamine with no success, I was given amitripyline, (aged 30) I was on them for three months. I had terrible side effects, heart palpitations, sweating, panic attacks etc. I felt like I was on another planet! In hindsight I should of come off them before three months but I was hoping so much that they would work.
I was desperate to do anything that might help my health and decided that after being on the pill for so long I would come off it. My periods were getting worse each month even on the pill. I had always been terrified of coming off the pill. I didn’t have a period for a couple of months. Then they came with gusto, the pain was agony.
My Gynae then tried to put me back on the pill, I tried three different pills on a continuous basis but none of them suited me and I just bled for three months. During this time I was sent to the women’s physio department for bio-feedback to see if this could help with my vestibulitus. The bleeding meant that she was unable to do bio-feedback. The vestibulitus got worse and moved up to the clitoris and the rest of the vagina.
I had a laparoscopy in October 04 in day surgery and was told when I woke up that I would need more surgery with a bowel prep as I had severe/stage 4 Endometriosis with bowel involvement. There was also a cyst present.
As an inpatient I had another laparoscopy with bowel prep in March 05, my Gynae cleared up with laser as much as possible and moved my left ovary off the bowel, the cyst had gone. When I woke up I was surprised to be told I would be treated with medication, I thought having surgery would cure me. Little did I know!
I took livial everyday orally and had a Zoladex/Goserin implant every 12 weeks (puts you into a chemical menopause). I grew facial hair because of the livial! Another joy! So I tried Marvalon and then Kilofem but I still bled and had pain.
My Gynae didn't operate on the Pouch of Douglas as it is a highly complex and high risk area. He frightened me by telling me the risks associated with more complex bowel surgery. So I put the idea of further surgery to one side and then tried acupuncture and Chinese herbs for 18 months with Trevor Wing http://www.naturalgynae.com/nav7.html. This helped my overall health but didn't touch the pain I was still suffering. Trevor did a food intolerance test due to some of my symptoms and it reported I was sensitive to wheat and cows dairy. I am still wheat free now and it definitely helps with bloating and extra pain. The dairy I don’t notice much difference but have stuck to eating sheep, goats or soya due to the hormones used in cows dairy. I don’t eat red meat but that is a lifestyle choice from my younger years.
Part two to follow.... Lily Lou x
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