I never imagined that I would want rid of a major organ in my body so much. Looking back now, I can see the times over the last 25 years where I have made decisions, acted irrationally or said something hurtful because of my hormones. I have lost friends, broken relationships, walked away from opportunities and spent so much energy containing volumes of negative, mean, hurtful thoughts and feelings. Sometimes I grieve a little for the time I have lost, but mostly I enjoy that I am now here and I can think straight every day and the world, in general, is a GOOD place. I feel lucky to have been in a country with a health service that has meant I could be treated, to have had some key supportive individuals in my life and to have an organisation like NAPS lighting the way. Here is my journey:
I can see now that from when I started menstruating I have had difficulties, “women’s problems”; I suffered from ovulation pain and severe period pain from my early teens. Over the years I tried various contraceptive pills which helped with the physical symptoms but always made me feel emotionally unstable.
It was in my mid twenties that I started to recognise the pattern with my moods - the ups and downs of my monthly cycle. One bonus was that it was easy to get pregnant – I always knew when I was ovulating because of the pain. By the time I was thirty I had two children and pregnancy had been a welcome relief to the mood swings.
After the birth of my second child, it became evident that the effect of my menstrual cycle both physically and mentally had increased. I was suffering from a myriad of pre menstrual symptoms including breasts so sore they woke me up at night, cravings that meant I would binge eat, reduced productivity at work due to my poor memory and lack of concentration.
I had started to try techniques to combat the PMS – Evening Primrose Oil, Star Flower Oil, vitamin B supplements, eating carbohydrates every 3 hours, regular exercise, and the rest. Some of this had an effect, but never very much, and so I felt it was time to see the GP.
I went along and saw an older, male GP at the surgery. I explained my symptoms and his reaction was that it was a ‘woman’s lot’ and I just had to put up with it. I went away but returned and made sure that I saw a female GP this time. Luckily, the GP I saw had an interest in Women’s Health and over the next 6 years she supported and guided me through the ups and downs that followed.
I was referred to the community gynaecology consultant who sent me for a laparoscopy. It was confirmed that I had endometriosis and that this would be the cause of my abdominal pain. During the investigation the endometriosis had been removed and I was prescribed a progesterone only pill to keep it at bay. Within ten days the progesterone had reduced me to a walking zombie. I went to see my GP – she told me to stop the medication straightaway and the endometriosis came back. This really highlighted to me quite how sensitive I was to hormones.
After this I used fluoxetine for the two weeks prior to menstruation to help with the mental symptoms of PMS. This didn’t alleviate the problems completely, but took the edges off feelings and meant that for those two weeks a month I was not in utter despair. Relatively quickly I started to tolerate the fluoxetine and so had to keep increasing the dosage until I was on the maximum dose. After 18 months I stopped taking it as my tolerance to the fluoxetine meant the positive effects were no longer tangible.
My symptoms were getting more and more severe, my cycle was becoming shorter and the length of time I was symptom free was down to about one week per month.
These were dark days, I trusted no one and accused my loving husband of all sorts of crimes that were figments of my paranoid imagination. I was exhausted and the constant chatter in my head meant I would self harm to try and find some relief. I started thinking about what to do next and the NAPs website was a great help, with information about treatments and the forums where real people talked about their similar experiences.
The community gynaecologist suggested I try Prostap. Prostap shuts down your ovaries and puts you into chemically induced menopause. The first couple of months were quite hard, I had menopausal symptoms and felt tired and got headaches, but it was better than where I had been; and by the third month, it felt like a weight had lifted from my shoulders.
My husband heaved a sigh of relief, the monster had gone. My friends and relatives all commented how well I was doing, and I felt like me! It was a revelation – life could be like this!?! I was amazed.
There were still side effects and there was still a cycle of symptoms and moods with the monthly Prostap injections, but it was SO much better than before. I felt like I had won.
However, after 8 months on Prostap the Community Gynaecologist told me that I would have to come off the drug as the long term effects of the injections were not known. I was gutted – I had found a way of feeling better and it was being taken away.
I went onto the NAPs Forum and asked people their views, and I looked for research about what happened to people with PMS after coming off Prostap, there was little to be found. I went back and challenged my gynaecologist, I really did not want to stop taking the medication.
He explained that sometimes a course of Prostap would ‘reset’ the ovaries and the way your body reacted to your hormones; and that for some, the symptoms did not return. He assured me that if the symptoms returned I could go back onto the Prostap and at that point, we would know for certain that the symptoms were related to my menstrual cycle and that surgery would then be an option.
I had no choice but to stop the Prostap and I was OK for about six weeks. Then the symptoms were back with a vengeance. Both the endometriosis and the PMS meant life was utterly miserable. I counted the days over the next three months to my next appointment with the gynaecologist. Up until this point the option of surgery had seemed extreme. Although my logical brain could see that I was suffering, there was always this little part of me that was convinced I was making a fuss about nothing; I was just putting it on.
The contrast between me on Prostap and me not on Prostap was so huge, so fundamental, I knew that I never wanted my ovaries to work again and that if someone would take them out - then please do it now!
The gynaecologist agreed that surgery was the best option and put me back on Prostap in the interim. I had to wait eight months for the surgery and the Prostap improved the situation, but I did find myself getting increasingly unpleasant side effects from headaches to tiredness after the injections.
I had both ovaries and my womb removed by keyhole surgery in October 2012. I am on oestrogen HRT and after recovering from the effects of major surgery, I have never felt better. I am 39 now and am thankful every day that I persevered.
I would not have got here without the help and support of my wonderful husband who really has stood by me through thick and thin. I can’t really comprehend what he has had to put up with; and I am utterly amazed that he did; but so grateful that he is still around; my GP and community gynaecologist who followed the right routes for the right reasons, even when I felt it could have gone faster or we could have skipped a step, we got to the end and I have no doubt that for me, surgery was the right option; and NAPs has been such a great resource and support, to know you are not the only one and to hear and see others experiences spurred me on and reassured me I would find a way to feel better.
I promised myself that I would share my experience when I could, and I am glad I can do it now and share such a positive result, I hope it helps others.