Endometriosis?

[Twoweekcruise]

Can endometriosis run in families?
My sister was diagnosed a couple of years ago in her early 40’s after years of being told her pain was IBS. They found a huge tumour on her ovary and suspected OC but when the ovary was removed they discovered it was endometriosis.
I am 48 and have had gynae issues and IBS for years and years. I have terribly low iron as a result of years of very heavy periods. (Ferritin is only 5).
I don’t really suffer from the excessive pain that my sister had but I have regular deep pelvic discomfort, hip and leg pain, lower back pain, pain on deep sex, awful discomfort during ovulation, very heavy periods, pelvic and lower back discomfort a week before my period. I have IBS and have lots of feelings of pressure in my rectal area too. I do have reoccurring ovarian cysts (currently have a cyst on an ovary), sometimes they are ‘chocolate’ cysts.
I also have awful, ongoing digestive issues.
I’m under gynae and gastro but no one ever mentions endometriosis. I did have a abdominal CT scan two years ago but nothing flagged up on that (can endo be detected via a ct scan?).
I am 48 now and I think maybe in perimenopause (again, can’t get the doctors to acknowledge this!), and things are much worse. Does endometriosis get worse during peri?

Chocolate cysts are endometrioma, I thought?

Mine certainly got worse in my 40s.

It was diagnosed after a scan for cancer picked it up.

I had lots of the issues you've mentioned too including cysts and thinking it was ibs.

HRT has helped mine.. I take progesterone continuously so I don't get periods now.

ScribblingPixie I thought so too but the gynaecologist I saw said no?!
Carlissa Do you take the progesterone on its own without oestrogen?

@Twoweekcruise

ScribblingPixie I thought so too but the gynaecologist I saw said no?! Carlissa Do you take the progesterone on its own without oestrogen?

I take a whacking great dose of oestrogen!

Still getting used to it but I'm in a much better mood most days 😁

Hi ive just posted on another thread about this but
I'm going through this now, and also through peri, my lap is on 7th Dec im 43.
Been fobbed off for years particularly the last 8 or 9 years, been backwards and forwards with issues gynae and bowel which have worsened

I've had to fight to be listened to i put my foot down with doctor and she referred me to endo specialist who agrees definitely sounds like endo, and looking at my notes was not happy it hasn't been investigated sooner. Feel free to pm me
I'm very anxious about my lap but it needs doing and long time coming. I think it can run in families my grandma had lots of gynae issues and I reckon she had it too if I do xx

Carlissa I will ask about HRT if I can get any doctor to take me seriously 🙄
Bluebellefae Thank you, I’ll pm you.

Chocolate cysts are 100% endometriomas and a really, really obvious sign a woman has endometriosis. If your gynaecologist has said otherwise, get a new one!

All your symptoms are classic endometriosis and IBS is one of the most common misdiagnoses. Yes, endo can run in families but symptoms aren't identical from woman to woman.

If you're in England you have the 'right to choose' so find an endo specialist and get referred.

P.S. HRT for women with endo should involve no oestrogen or very low dose. Endo feeds on oestrogen.

My ferritin was at 6. I now take northisterone daily after degesterol failed to help and so did the 2 coils my body expelled!

I've just seen a gynae.

Ask for referral. You may find an ablation works for you.

I was also given buscopan because I get IBS symptoms too and it helps.

@bhooks

P.S. HRT for women with endo should involve no oestrogen or very low dose. Endo feeds on oestrogen.

Now I'm concerned!

I've had a rotten time trying to sort out peri menopause and what I thought was PMDD (but now not so sure)

It's alarming how little doctors seem to know?

A menopause consultant prescribed my hrt and he should know all my history with endo and adenomyosis so I thought it would be ok... Thanks for flagging it, I'll look in to it. I haven't had a period since starting hrt though so maybe I'm further along peri menopause than I realised.

I have endo diagnosed through laparoscopy six years ago and had it ablated. I was told it is hereditary. The only way that it can be diagnosed is via internal investigation so it doesn’t show up on ct scans etc. I would also echo the advice to seek a referral and do your research on the gynaecologist as the treatment can differ - not everyone does ablation for example. Happy to PM if you need any other info about my experience.

@NothingInterestingToDeclare

I have endo diagnosed through laparoscopy six years ago and had it ablated. I was told it is hereditary. The only way that it can be diagnosed is via internal investigation so it doesn’t show up on ct scans etc. I would also echo the advice to seek a referral and do your research on the gynaecologist as the treatment can differ - not everyone does ablation for example. Happy to PM if you need any other info about my experience.

Thought I'd posted but it seems not, apologies if this is a double post..

I had my endo and adenomyosis diagnosed after an MRI scan for cancer. Apparently it was very clear? I've not had any internal investigation.

Basically their attitude to treatment is very much 'you've lived with it this long just wait for menopause!'

100% sounds like endometriosis- also adenomyosis which I’ve just been diagnosed with is notorious in women our age. Look it up! I have similar experience & am interested in the HRT mentions- I was on it for 6 months & whilst great for psychological symptoms it seemed to flare up all my old gynae ones (had stage 4 endo removed in my 20s)… told doc about this when they prescribed it but they dismissed it however after serious pain for months & raised CA125 I was referred on 2 wk referral for scans etc. Thankfully all clear but ovarian cancer has v similar symptoms to endo/adenomyosis & causes raised Ca125. Anyway they took me off hrt & im missing it!! Does anyone have any experience of managing endo related conditions whilst on it? OP def push back & demand laparoscopy for definitive diagnosis. I’ve been told scans don’t show up endo. MRI can if expertly interpreted. Good luck.

Thanks everyone. I will push at further endometriosis investigations at my gynae appointment next week.

It can go down the female line in some families.

Chocolate cysts are endometriomas and are linked to endometriosis.

Its not always detected on scans and the usual way it is diagnosed is via a laparoscopy which is a keyhole surgery op.

Ask this person outright about endometriosis and if they are uncertain/don't know find another gynae to work with. Given what you've been told I would find another gynaecologist to speak to and preferably someone at a BSGE centre www.bsge.org.uk/endometriosis-centres/.

All your symptoms listed can relate to endometriosis being present and what you've written down in your initial post should have been flagged up for this far earlier too. It may be also that your IBS is actually endometriosis on the intestines; it can reach there and many women too are misdiagnosed with IBS when endometriosis is actually the cause of their ongoing symptoms.

Thank you AttilaTheMeerkat that’s really helpful.

AttilaTheMeerkat I have just checked from the link and the gynaecologist I am seeing next week is down as a local endometriosis gynaecologist, so fingers crossed.

This is endometriosis. Find out about it as much as possible, good luck too.

languagelover96 thank you.

It sounds like classic endometriosis symptoms. I have just been diagnosed but knew something was very wrong since my periods began circa 16 years ago. There are some very skilled specialists who can see endometriosis on scans but the gold standard for diagnosis is a laparoscopy.

Although it’s an operation I didn’t find it too bad at all. The worst part was the gas they use to inflate your abdomen rather than the treatment itself. So please don’t be worried about the prospect of an operation. Best of luck.

Good luck with your appointment. I was fobbed off with ibs and pain killers for years and ended up going private as gp would not refer. As suspected I have endo and have since had the coil fitted.

It is shocking how poor the knowledge of this disease is, and the energy it takes to keep pushing for answers should not be necessary.

Thank you GodspeedJune I won’t lie, I am petrified at the thought of a laparoscopy, I had general anaesthetics.
Indnbrdge91 I will be so annoyed if I do have it that it’s taken till my late 40’s and years if gynae appointments and procedures for it to only now be discovered.

If you have endo can it feel like constant period cramps but in vagina lower down? I get this 3/4 weeks a month. Had loads bleeding issue and bowel pain but no diagnosis beyond it’s not fibroid oh well. I’ve always had horrific periods and I’ve mentioned endo least 3 times but due my age seem think we’ll stop in next 8-10y so can’t do anything.

Also have trouble with bladder few weeks at time where little power it’s so frustrating. Must been back 4 times lasts year and no one seems care. Have fill in stupid e-consult each time and none of the boxes fit my random set symptoms.

@2020isnotbehaving

If you have endo can it feel like constant period cramps but in vagina lower down? I get this 3/4 weeks a month. Had loads bleeding issue and bowel pain but no diagnosis beyond it’s not fibroid oh well. I’ve always had horrific periods and I’ve mentioned endo least 3 times but due my age seem think we’ll stop in next 8-10y so can’t do anything.

Also have trouble with bladder few weeks at time where little power it’s so frustrating. Must been back 4 times lasts year and no one seems care. Have fill in stupid e-consult each time and none of the boxes fit my random set symptoms.

This sounds like classic adenomyosis

Thank you never heard of that! Last period had horrific stabbing knife pains in vulva never had before that seems to be classic sign. Doctors never mentioned of course. Is it same person to be referred to?