Anyone with experience of endometriosis? Looking for some advice

[Picklemeyellow]

I wonder if anyone would be able to offer up any advice?

I’ve been on a two decade journey back and forth between gynaecologists and gastroenterologists with years of gut issues, pain, bloating, very heavy periods, really painful ovulation (pain would last all week), regular ovarian cysts, endless removal of uterine polyps, countless us scans, iron infusions.

Last year, I ended up having a uterine ablation to ease the heavy bleeding which has failed (post ablation failure) and left me in lots of pain/discomfort. My gynae (who performed the ablation) hasn’t been particularly helpful, just advised pain killers and the mini pill.
So I asked for a mri scan as my sister has endometriosis (have menetioned this to doctors but always dismissed). I wanted to check what was going on with this post ablation syndrome.

So I now have this letter following a 5 minute call from my gynaecologist just before Christmas to discuss the findings of the MRI. He has now discharged me so I can’t ask him anything, GP next to clueless and the wait to see the endo team will be sometime. I have no idea where to get advice from, I can not afford to see anyone privately right now.

What I am a bit confused over is on one section of this letter. It mentions deep endometriosis (not sure what ’deep’ actually means) and later when mentioning the bladder and bowel says ’no evidence of endometriosis’.

Does this means endo elsewhere but not seen around the bladder and bowel? Also what does possible pelvic adhesions between uterus and ovary mean?

I’m a bit confused, I’m 50 and whilst I have suspected I have had endo for a long time because it was always dismissed I’ve never really looked into the condition and am now trying to find the best avenue for me to take with these conditions and my age.

Bumping for you op, I've just had mri looking for it.. BTW did you have contrast dye? I didn't...

Sounds extremely confusing and I can't believe they didn't go through that letter properly with you. If you don't get clarity here. Perhaps an endo charity can help?

It mentions that you have Adenomyosis- it's a very painful condition in which tissue like the lining of the womb forms within the muscles of the womb.
www.nhs.uk/conditions/adenomyosis/

It looks like you have been referred to the endo team, who will also treat adenomyosis.

I can recommend the Adeno Gang for information and support- www.theadenogang.com/
I interviewed the founder and she was great, very well informed.

I'm not an endo specialist but am a doctor ( not practising) and work with endo and adeno specialists including preparing patient info.

Thanks WillBeatJanuaryBlues I did have the contrast dye. I feel as though my gynaecologist just wants me off his hands tbh. Before the ablation I specifically asked about post ablation syndrome and he assured me is was so very unlikely that I’d get this, he even laughed at me for asking so many post procedure questions.
Good luck with your results btw.

Yes he did says I had the adenomyosis too (deep joy 🙄). I’ve joined a couple of FB support groups for that. Not heard of The Adeno Gang though, thank you.

cathyandclaire do you know much about endo/adeno and perimenopause? I feel this has all exacerbated since I hit the age of 45.

That's interesting, how in the earth can they find mine without contrast dye??

I’m not sure, tbh I’m not 100% sure what the contrast is used for exactly, I thought it was just to show up very fine blood vessels and the like?

I know it's frustrating but your gynae has referred you to a specialist endo team, which is the best thing for you. You will get much better treatment and results at a specialist centre. They are likely to have a clinical nurse specialist ( Endo CNS) who can be a great source of info and support.

Your oestrogen levels can fluctuate during peri which can worsen endo and adeno- they do usually get better after the menopause, but that could be some time off.

Can you chase your referral? I know waiting times got much worse during Covid, women's health was disproportionately affected.

@Picklemeyellow did you have a trans vaginal scan too? That's how they found mine (as one of my ovaries was fixed) plus they were monitoring some cysts caused by the endometriosis

I’m not sure what it all means but it’s normal that if they suspect the endometriosis is deep or affects other organs they refer you to a specialist endometriosis team rather than just the normal gynaecologists…..and they may be at a different hospital. So it sounds like that.

When I saw the HRT lady (just answering your bit about the uterus and ovary), she told me that a fixed ovary is a classic sign of quite severe endometriosis where the endometrial tissue sticks the ovary and makes it fixed

They have asked me to consider a laparoscopy because apparently they can 'unfix' it and that can help with the terrible pain

Apparently the endometriosis improves most menopause but the adenomyosis may not. Either way, like you, I wish I could get to menopause to see some improvement!

Thanks cathyandclaire, I am really grateful (and relieved) I have eventually been referred to the team but I did ring an enquiry on timescales and was told the wait is long and I won’t be seen any time soon, sadly.

GlamMa I’ve lost count the times I’ve had us scans, even the one I had in October didn’t pick any of this up, only the retroverted uterus which I’ve known about for years. It didn’t even pick up the adenomyosis.
Are you going to go for the laparoscopy? The thought terrifies me tbh and a hysterectomy even more so (not so much the op but the GA). I am the same as you, just wish menopause would hurry up (not many women say that lol).

I changed GPs in 2021 and I had some pain/bleeding after sex so I went to new GP in 2022 and he referred me for the transvaginal scan (the one where they stick the scanning stick inside you) and it was that that picked it up. I had that in early 2023.

Believe it or not, that's the first time anyone had ever bothered to look at what was causing the pain/bleeding and by then I was 50!

I discussed with GP (next steps) that by then I had lasted till I was 50 without intervention that I might as well wait till menopause and see what improved. Rather annoyingly it's just not happening very quickly!

I also have a retroverted uterus btw

Hi! I had issues similar to yourself for about 5 years before I was taken seriously. I was passed from pillar to post as gyne kept discharging me but were 100% certain I had endo. GP was adamant I needed an exploratory laparoscopy to find out what was going on, but again gyne surgeon refused and discharged on the basis of risk due to my BMI being low. I decided to pay and see a private gyne, (about £100 in 2013) who refused to believe I had endo but was certain I could have the op as my BMI was no issue.
Thanks to the private gyne I was allowed the operation, and she was right. There was absolutely no signs of endo at all, yet I'd been told for years I had endo and it had been seen on a scan.

They did however find abdominal and pelvic adhesions which had also spread to my liver, and ovarian cysts, all of which explained alot of my symptoms. I am now on pain management which has helped me a lot. I was also give the prostap injection at one point which was a temporary thing, but since having that injection, I now have normal, regular periods.

With the amount of problems you are having, I'd be asking for a referral to a surgeon for what I had, exploratory laparoscopy. This helped confirm I didn't have endo Evan though gyne were 100% sure I did, and it also found the adhesions and cysts. Thanks to that op, I was booked in for a 2nd to have the adhesions separated, and I was finally taken seriously about my pain symptoms which has enabled me to be allowed long term pain relief, and I don't get that look from my GP anymore that I'm full of shit or exaggerating which is a bonus 😅

I used to run The Endometriosis group in my city along with the Well Womens centre but this was early 90s .
Things have changed scince.
Back then a laparoscopy was the first thing that was offered if suspected.
I had the following done and was the first in my hospital to have it done..
Now l understand it's common practice to have the ablation.

Endometrial resection is a procedure involving the removal of a woman's endometrium (the lining of the uterus) with an electrosurgical wire loop to prevent excessive bleeding during menstruation. In most cases, this procedure significantly reduces or stops blood flow..
But l then had ovarian cysts.. too many to mention. One was a An ovarian dermoid cyst contains fully mature tissue like skin, hair and teeth... that was size of an orange.
I finally had total hysterectomy age 39.
At first it was a Godsend and l loved being on HRT.
But because l had 22 gynecological procedures including 11 laparoscopies to remove the cysts.. it has left me with horrific painful adhesions on my bowels/ colon/ intestines/ bladder/ vagina.. and last year when l had my gallbladder removed the surgeon noticed adhesions on my liver and pancreas.
So before you start suffering much longer .. I'd ask for hysterectomy ASAP to stop all the complications for leaving it too long.. prevention is better than them trying to cure with all kinds of unnecessary procedures.

I picked up on the adenomyosis, this condition is very painful. I’d have a word with a G.P who understands a bit more about gynaecological conditions. The fact that the gynaecologist has discharged you is disgusting, you’re entitled to a second opinion.

Ask your G.P to re refer you to a gynaecologist via ebook. That’s what we’ve done in the past. They fulfil NHS contracts in private hospitals, try to find one that is a member of BSGE, these specialise in laparoscopic procedures and endometriosis as well as adenomyosis. You’ll be allocated to a consultant, but you can change it to another one more suited to your needs. We have a company called One Health that the NHS goes through and have a list of the consultants, we then looked them up to see if they were specialists for what was required, and changed it to someone that was appropriate.