“Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation.” The official line.As March is Endometriosis Awareness Month I decided to share my story by using Sheryl's March linkup Click To Tweet
My first experience of excruciating period pain and menstrual flooding was at 14 years old, how embarrassed and scared was I to have to ask the School bus driver to take me back home because I had leaked all over my underwear and clothing.
I still remember the day as if it was yesterday because the driver couldn’t take me all the way home so dropped me off in the village before mine. Gingerly I made my way to the first house where I thought someone might be in and knocked on the door.
The door was opened by what I deemed at the time to be a middle-aged lady and all I can remember is bursting into tears.Thankfully she took me into her house and let me ring my dad, who came and picked me up. Click To Tweet
Thankfully she took me into her house and let me ring my dad, who came and picked me up.
The following day I went to see my GP and I can still remember this rotund elderly man telling me it was what happened to women and I just had to get on with it.
As soon as I was old enough I opted to go on the contraceptive pill just because I believed it would make my periods lighter and it did but still didn’t help with the pain.
I continued on the pill for just short of ten years and at 22 I was diagnosed with a DVT in my leg which I was informed was caused by being on the pill, so I had to stop taking it straight away.
Shortly after the heavy bleeding started again along with the pain.
My sister lived next door to a Gynaecologist and after chatting with him he agreed to see me in his clinic.
Going along to his clinic a week later, he took some blood, carried out an internal examination and then sent me off for an ultrasound. When I came back into his room he started to explain to me he was currently undertaking training about an very hard to diagnose condition called endometriosis and he believed it was possibly what I had.
A couple of weeks later he booked me in for a laparoscopy where it was confirmed I did have endometriosis and he removed what he could, but he did advise me that sadly it could come back.
Over the next few years, I tried all different options to try and stem it, I suffered three miscarriages the final one in February 2003 when I had to give birth at 16 weeks.
At that point, I went back to see the gynaecologist and he advised me to have the Mirena Coil fitted as it would stop my periods altogether so hopefully, it would keep the scar tissue at bay. I also had to make the decision I was never going to have a child because the only options to keep the endometriosis at bay were contraceptives.
I was 37 and even though my periods stopped I still had all the pain in my stomach and back, suffered from PMT, was tired all the time, sex had been painful for as long as I could remember, I had pain on weeing and pooing and it was starting to have an adverse effect on my mental health.
At 45 after trying two Mirena Coils, a conceptive implant, the depo injection nothing was working, so I was offered my final shot of endometrial ablation, my gynaecologist advised the only step available after this was a hysterectomy.
I probably got about 3 months relief from the ablation and it was just at the time for my follow up appointment that I started to struggle again, so the decision was made that the only thing left was a hysterectomy.
I managed to put it off for just over a year because there was a big restructure happening at work and I didn’t want to lose my job because I would need 3 months off sick.
May 2013 I agreed to be put forward and received a date for September 10th 2013, I remember this because it would have been my birthday two days later.
On the 21st of July 2013, I had my first collapse at work which was treated as a possible TIA, it was only five years later that I would find out this was their first suspicion of MS. I digress but this resulted in having to postpone my hysterectomy for 6 months.
My hysterectomy was rearranged for 7th January 2014 and my gynaecologist performed a radical hysterectomy – my womb and surrounding tissues were removed, including the fallopian tubes, part of my vagina, ovaries, lymph glands and fatty tissue during the operation one of my ovaries had to be delicately detached from my bowel and he spent over an hour removing the remainder of the scar tissue (endometriosis).
I saw him again two weeks later because I was in so much pain and even opioids weren’t touching it, he explained just how much he had taken away and said I would be in pain while it healed up inside.
Ironically once again at work, we were going through an another restructure, (NHS for you), so I asked him to only sign me off for six weeks, not the eight he was advising.
The hysterectomy sent me straight into menopause, I wasn’t even perimenopausal beforehand, so on top of trying to manage my pain I was also having to cope with the hot sweats and all the menopausal symptoms you could imagine, but I still went back to work after six weeks.
In hindsight, it took me well over a year to feel some kind of normal again and thankfully at 53 years old I still don’t have any signs of the endometriosis returning even though I was advised it could.
Still difficult to diagnose
Endometriosis is still very difficult to diagnose even all these years on, I feel very fortunate that I had access to a gynaecologist, who possibly used me as a test case but all the same he stayed with me right up to the end and even though he didn’t perform my hysterectomy, a member of his team did, the main thing was he believed me and he took me seriously right from the start and for that I am forever grateful.
A little sad
I am sad though and maybe more so now then I was then, that I never got the opportunity to have a child, no one ever said endometriosis was the reason for the miscarriages but I have to believe it can’t have helped.
In the early days, one of my GPs even suggested getting pregnant might help, I didn’t have any problems getting pregnant I just couldn’t hold on to them so making the decision to stop trying was the only option I felt was open to me.
If you resonate with any of the above, keep pushing medical staff as it still isn’t the first thing they look for and I believe there are still so many undiagnosed.