Hello! I thought I’d share a bit more about my experience of Endometriosis with this post, as it’s such a common condition (I think the stats are around 10% of women in US have it!) and so often misdiagnosed.
Ps. The title of the post is inspired by so many of the responses I get from people when I talk about it!!!
What is it?
Endometriosis is an autoimmune condition where cells of the womb are found outside the womb in other parts of the body; usually in the pelvis, ovaries, bladder or bowel. The cells mimic the patterns of menstruation so are affected by the monthly hormone cycle. When they try to leave the body like a period they’re unable to so they get stuck and form adhesions to the pelvis or nearby organs. It’s not a life-threatening condition but can certainly affect quality of life depending on the severity.
How the hell do those cells get there?
Well no one really knows for sure as more research is required but there are a few theories:
- Retrograde menstruation – it’s possible that some of the womb lining flows back up and through the fallopian tubes and embeds itself on the organs of the pelvis instead of leaving the body as a period
- Related to immune issues – either a weakened or heightened immune system
- Endometrium cells spreading through the body in the bloodstream or lymphatic system.
How is it treated?
There’s not really a cure for Endometriosis but it can be reduced and symptoms can be managed. The type of treatment offered generally depends on the severity of the condition and whether you’re actively trying to conceive or not. In my case, I had a suspected diagnosis from an ultrasound scan but for many people the endo will not appear on a scan so you might be required to have an exploratory laparoscopy to diagnose and treat any endo found.
Other options are; taking the contraceptive pill or other drugs that essentially shutdown down the normal hormonal cycle which is obviously counterproductive if you’re trying to conceive but could be beneficial for a few weeks/months prior to starting IVF or conceiving naturally.
Why does if affect fertility?
Again, not enough is known about the condition to be able to say for sure but the adhesions could be blocking the fallopian tubes or could stop ovaries from releasing eggs. The increased oestrogen could also play a part by interfering with the monthly cycle.
I was diagnosed with endo after I noticed that I was spotting in between my periods. I was lucky that I had a GP who was knowledgeable in this area and she sent me for a scan straightaway. They found a large cyst on each ovary and diagnosed me there and then with suspected endo. The only way to confirm a diagnosis is to have a laparoscopy, which is a minimally invasive surgery where the surgeon is able to see inside the pelvis area and ovaries through a small camera and can remove adhesions or cysts. This tends to increase a woman’s chance of conceiving naturally for the first 6 months after surgery but any longer than that and the endo can come back and cause the same issues.
We had the HSG (Hysterosalpingagram) test done fairly soon after trying to conceive to check the fallopian tubes weren’t blocked and I was definitely ovulating but 3 years on we’ve never had a positive pregnancy test from trying naturally. One of those painfully annoying “unexplained” explanations…
It’s a really tricky condition to live with and many people claim that nutrition and external environmental factors have a lot to do with it (we can explore these theories further another time) As it’s non life-threatening, not enough research has been done on it to date, but I’m hoping that some new big studies will come through in the next few years that might start to give us some more answers; and hope.
I’d love to hear about your fertility journey stories – do you also suffer from endo? Have you been experiencing some of the symptoms but have never had a diagnosis? Wherever you are with your journey, I’d love to hear from you!
This post is also available in: Arabic