Me, Myself and Endometriosis
This is a blog post I hoped I’d never have to write, you see I don’t like posting anything too personal about myself but I now feel the time is right to share my experience with you all and perhaps raise awareness or pop together a small social media support group. Who knows.
I have Endometriosis.
What is Endometriosis, I hear you ask… well;
To put this very simply (and without any male readers to completely freak out) Endometriosis is really heavy and excruciatingly painful periods. Caused by endometrial scar tissue on the outside lining of womb, ovaries and other possible surrounding organs. Each month this scar tissue will grow during my cycle and shed/bleed just like during a period, the only problem is that this “bleed” cannot then leave my body like my period which causes the pain. If left untreated the tissue will eventually damage other organs and can lead to infertility. There is no overall cure for this condition, once you have it you will always have it, the symptoms can be treated with a range of options, these I will tell you about later.
That is basically the gist of it.
I’ve always had rather heavy periods, these have been the normal for me and I just learnt to carry on. As a teenager I started using the pill, these reduced my bleeds and made life a lot more bearable. When my husband and I started trying for our first child it took 18 months to conceive, i’d been on the pill for the best part of 6 years, during this time my periods got heavier and heavier but I never had the pain I experience today.
Roll forward time, 6 years, 3 pregnancies and 2 children later, my youngest to now be 2 years and 9 months old. This brings us to Christmas Day 2014 and it was a lovely day spent with family, I was on day 1 of my period (yep, shit timing!) but something just wasn’t right. I was in agony. We’d gone out for a family Christmas meal, when the pain started, thankfully I always carry Ibuprofen with me, I popped two pills and slowly the pain drifted away until it was a dull ache and I could enjoy the meal.
4 hours later the pain returned, I’d been caught off guard as I’d not batted an eyelid to the pain I’d experienced earlier due to the excitement of Christmas Day and didn’t think it would return. I needed to take some more painkillers quickly and took myself off to lie down whilst I waited for the pain to go. By which point I looked really pale, I felt incredibly sick and the pain was excruciating.
I did what anyone else would do at this point, I googled my symptoms and immediately it threw back at me Endometriosis. I’m very sceptical researching medical stuff on the internet but reading what NHS Choices was telling me the symptoms really hit the nail on the head.
Armed with this bit of information I survived the coming days of pain during the Christmas Period until I was able to get to the doctors who then gave me a referral to a Gynaecologist.
Over the coming months the pain was bad, but I was prepared stocking up on painkillers and basically just using them as a lifeline during my periods. I’d also been prescribed Tranexamic Acid to cut down the blood flow. This is how I lived.
My Gynaecology appointment was for February, here I explained to my consultant again my symptoms of which he agreed outright that it sounded like Endometriosis. Here I was given options of a treatment plan, to get a diagnosis he recommended a laparoscopy operation, without that diagnosis there was no way telling how bad the endometrial tissue was and what the future had in store for me. With the operation any scar tissue could possibly be treated to then alleviate some symptoms. Other options included using the monthly combined pill which contain hormone to reduce blood flow which in turn will reduce the pain, or injected hormone which acts as an artificial menopause.
With the information I opted for the Laparoscopy route, to get a firm diagnosis and hopefully have any scar tissue removed which was causing my problems. My surgery was then booked for May after our holiday.
The surgery was horrible, I hated being put to sleep and I nearly freaked out when I woke back up. I hated waking up and not having Sam by my side, I felt sick, panicked and out of control.
When I’d come round properly, returned to the ward my consultant came to chat to me. He explained that there were only a couple of pieces of traceable scar tissue of which most were removed and then explained to me that to have my level of pain is nothing new given that I didn’t have much endometrial tissue. Some women can be riddled in scar tissue and experience no pain and then some can be like me, have little tissue but significant pain. With this information I didn’t feel too bad but I did wonder about my pain threshold and thought maybe I was weak?
I knew this couldn’t the case though, how can I have a low pain threshold but go through childbirth with little/no pain relief??
3 months later (2 weeks ago) brought my follow up consultation. Since my operation the pain has been more bearable and periods had been lighter, I was a happier person. I’d discussed with the consultant all this and he was happy, although given I was experiencing some discomfort still it was likely to at some point get worse again but I was happy to carry on living the way I am. My alternative options were again given to me incase it got bad, but Sam and I have discussed about having another child to the monthly pill/hormone injections really are not an option for us right now.
2 weeks after the follow up appointment brings us Sunday/Monday (the weekend just gone) and I was nearly floored with pain again. After having a lovely day with my family Sunday in Lancashire, we travelled home in the evening the pain made a come back, armed with painkillers I survived but yesterday was really hard work and by last night I was exhausted through pain and a high blood flow.
Today I am in limbo, feeling a lot better than yesterday but questioning what I should do next. Sam and I want another child but what I suffered with yesterday was nothing short of a joke. Intentionally another child would have not come for another year or 2 at the earliest, I wanted both my children in school but now I feel like I have a rush because my fertility is a ticking time bomb.
How many months can I cope with these symptoms before conceiving?
Will I actually conceive?
Will my family cope with 3 children before Leah is in school?
Am I just being drastic because my fertility hangs in the balance?
If I start treatment, leaving my infertile, what will my life be like living with an artificial menopause?
If the treatment fails my last option would then be a hysterectomy…. !
I’m only bloody 29, I shouldn’t be considering things like this right now, should I?!
Right now I have so much going through my head… I don’t know which avenue to turn down or what to do.