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Endometriosis – a personal story

Over this past week I've had more discussions about endometriosis than I have done in months, all thanks to the BBC releasing the results from questioning 13,500 women highlighting the effect endometriosis has on them.  This research described how almost half of the women have had suicidal thoughts, are addicted to strong prescriptive painkillers and have had their day to day life effected by the condition.  This research has led to the MPs announcing that they will be leading an enquiry into women's experiences of this condition.

 

FINALLY - I hear so many women shout - and that includes me!

 

I wrote a post back in March 2019 about Endometriosis and what it is and the facts surrounding it.  That post was very factual and what I didn't put in the post was a more personal experience from someone who has endometriosis.

Some of the comments I've received this week have included people who said, yes this is bad but periods are only for a few days of the month so how can that lead to so many women feeling suicidal?  This is where I'm so pleased that this health issue is getting the exposure that is so needed.

Endometriosis effects women every day, and not just during their periods.

The tissue within the uterus (endometrium) finds itself in other parts of the body (where it really has no business being) and this tissue responds to the changing cyclical reproductive hormones in the same way that the uterus lining does.  Each of the menstrual hormones has a specific job to do at a different time of the month, and this endometriosis tissue will change throughout in response to these hormonal changes too.  Within the uterus this is fine, but outside the uterus these changes to the tissues can create inflammation, pain and adhesions.

Those of you who know me personally or professionally will know I'm not one to discuss my personal issues in any great detail, so this post is something quite new for me - and rather exposing as I'm by nature quite a private person.

My work as a complementary therapist has led to working with a lot of women dealing with their own reproductive health issues, and as all of these women know these things are never straight forward and never exactly the same for everyone - and that's the same for me.  This is my story and isn't the same for everyone, which is why the treatment process and management will vary for each woman.

So my story is as follows:

I think it's safe to say that I've have had a rocky relationship with my uterus since the onset of my periods - which started far too early for me, and this has been compounded by the ever worsening symptoms I've had since my 20s - I'm now 47.

I've currently got a great gynaecologist and team who are taking good care of me, but that has not always been the case.  At present I've had a diagnosis of multiple fibroids (in the uterine lining, muscle wall and pelvic cavity) and adenomyosis - all of this leading to a uterus the size of a late 1st trimester pregnancy and 3 days of the month I'm unable to plan anything beyond my bathroom and bedroom so getting out of the front door can be unthinkable.  This means planning my diary weeks in advance to ensure I don't book too much in otherwise there's the risk of cancelling (which I hate to do).

This very heavy period is made worse by period pains described to me by a consultant as being equivalent to early labour pains.  These pains are partly due to the fibroids and adenomyosis but mostly due to endometriosis.

Now, I suspect I've had this condition since my mid 20s at least, where one gynaecologist hinted at it at the time but nothing was ever confirmed.

My last gynaecologist was quite dismissive after he diagnosed the adenomyosis (this is endometriosis in the muscle wall of the uterus).  He just wanted to pop in a Mirena coil and forget all about what was going on.

One day was the last straw for me - I asked him if the symptoms I have could be endometriosis, he said "yes, I reckon it probably is".  So I asked why he wasn't then looking into investigating it and doing something about it and his response was along the lines of "What would be the point, it'll just come back within a few years".

Oh yes, that old line......

I'll tell you what would be the point - even if it gave me only 2 months of less every day pain where I could gain back some quality of life - that would be the point!!

Anyway - once he said that I left his office and never returned.

I did a lot of research and booked myself a private gynaecologist appointment and scan (I love the NHS and have never gone private before but I was desperate) - and that was the best thing I've ever done.  They were so good and for the first time in years I felt like they actually understood what I was saying and how I'd been suffering.

The consultant realised that I was self paying so she wrote to my GP to ask them to refer me to see her under the NHS as she worked within my NHS trust.  I've been seeing her for about 14 months and she confirmed the endometriosis diagnosis quite early on - it's pretty severe and a lot of adhesions within my pelvis including on my bowel - so organs are stuck together.  Much of this could have been limited if treatment had been done earlier.

The adenomyosis has also grown.  As this is endometriosis in the muscle wall of my uterus it has left a lot of scarring on my uterus muscle (myometrium) and this restricts how easily the muscle can contract and expand, increasing the pain before and during my period.

That last gynaecologist had told me that I had surgical options but it would mean that I couldn't get pregnant, I told him that was fine as I wasn't planning on having children so surgery could be a good option. His response then was that he wouldn't do the surgery in case I changed my mind about children!! He said menopause would help fix most of my problems, even though this was about 10 years away if it came naturally.

The lovely new gynaecologist has been the total opposite. She listens when I speak and I explain the constant pain and problems and she actually tells me off when I make light of it, saying that I shouldn't be dealing with this. It's like a breath of fresh air! She was willing to do a hysterectomy (the main "Cure" for adenomyosis) but due to the endometriosis adhesions with my bowel there is too great a risk of complications and it would be a difficult surgery so that is no longer an option.  But she didn't leave it there and kept thinking of what else could be done.

We are now about to do a fibroid arterial embolisation (UAE) in the next few days, where the interventional radiologist will stop the blood supply to my uterus by plugging up the uterine artery.  This should then starve the uterus of blood supply and over time reduce the fibroids and adenomyosis.

 

Then after a few months we'll deal surgically with the endometriosis in the rest of the pelvis.

 

The consultant did give me a full 6 month dose of Prostap, a GnRH analogue, that essentially works as an ovarian suppressant putting me into a temporary menopause.  In younger women who are far away from their menopause they can experience extreme side effects from these medications, but I have to be honest that for me this was great.  For the first time in as long as I can remember my pelvis is no longer bloated (a term called "Endo belly"), my all over the body inflammation was reduced, I stopped being anaemic as I wasn't having periods, my uterus shrank down so less pain in my back from the pressure, I don't get hormonal skin hives (oh yes, this is a real thing).

Yes, I had the occasional hot flush and mega joint pains (all menopausal symptoms) but compared to what I had been dealing with before this was a walk in the park.  Unfortunately this cannot be given for more than 6 months due to the other side effects like bone thinning - and as I can't take HRT due to the breast cancer link they can't keep giving me this.  But, having 6 months of relief made me actual realise just what I was dealing with day to day in terms of the negative symptoms and how I'd just got used to it.

 

So why share my story now?

I treat women every day using reflexology or massage who are going through similar things.  I don't normally share my story with them as that time is for them to be heard not to have me off load my issues on to them, but I want them to know I know exactly where they are coming from.

And also, I wanted to keep endometriosis talked about and not keep it as this unseen problem.  The more it's discussed the more likely it is that something will be done to improve the time to diagnose this horrible condition, the current time for diagnosis is 7 long years!  Also, to look at better ways to help younger women manage the all over day to day issues they have - there has to be more that can be done for them as the current management options are almost as bad as the endometriosis itself.

I've been fortunate in many ways, despite all the day to day inflammation and pain mine is not so bad that I've reached for the addictive painkillers.  I use reflexology, massage, acupuncture and osteopathy regularly as a way to keep my symptoms managed and under control.  Of course during the period and few days before I do reach for pain relief, but I try to limit this to the paracetamol and ibuprofen as stronger ones make me quite sick and then I just ride out the worst days.

 

Here's to improvements for endometriosis diagnosis and management - and even a cure!

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