Had endometriosis...now I don't..

[lilyflower1803]

Hi all.
I’m really quite gutted. 5 years ago I was told I had minimal endometriosis, they were small but I saw photos. After suffering profoundly with my periods since I was 13, getting it diagnosed gave some answers. My symptoms got worse, and referred a lot to my bladder. I couldn’t walk because I was in pain, but would be ok some months but have had to go to A&E or take high doses of codeine on others. But have always had heavy periods with regular flooding, irregular cycles, intermenstrual bleeding, daily pain etc. I was referred for another laparoscopy which I had yesterday, that came back as clear- they couldn’t find any endometriosis. I was on day 8 of my cycle during surgery (still bleeding from a period) and they saw lots of retrograde menstruation in the pouch of Douglas and a distended bowel, but no endometriosis. My last couple periods have been ok, but in general I still have all my problems and will continue to suffer.

It’s good that they didn’t find anything extensive, but now I feel back to square one, with apparently no diagnosis and no answers to the pain. Just feeling a bit disheartened and needed to vent to people who would understand!

Anybody have any idea of what my next steps could be?

Thank you in advance

Bumping in case anyone has any insight?

Thank you :)

Endo can still be present even if not seen on laparoscopy. Can be microscopic but still cause symptoms.

I'm sorry to hear this OP it must be so frustrating when you though you knew the cause. Did the Dr's say anything about it being present before but not now?

I was having tests for awful pain last year, never found anything, I ended up going back on the pill which manages symptoms.

Sorry you are going through this OP. Its sounds awful.
Does the laparoscopy look at the outside of the bladder? Did they take any samples to look at closer?
A friend had years of urinary symptoms, scopes inside the bladder and was eventually referred to psychology as it was 'all in her head!'. In the end, they found endo on the outside of her bladder which had caused the symptoms all along.

That's interesting maybe it is still there then! On my old lap photos you could see the gunpowder lesions surrounded in white tissue.

Unfortunately not :( they came to see me as I had just woken up, I was still very out of it and just sort of kept saying 'oh ok then', when really I should have been questioning everything!

That is so frustrating for you as well, I really hope you find answers soon. It just seems so unfair

Thank you so much for your comment. As far as I'm aware they took no samples. when the registrar came around to talk to me, I was still half asleep! So I really should have asked where they had a good look. I have requested my documents which should include the surgery photos so I may be able to work it out with a bit of help. My mum had endo too, and had it all over her ureters- she also had bladder symptoms.

How awful that they dismissed your friends pain so much that she was referred to psychiatry! I cannot believe this happens in our healthcare system. I'm glad she managed to find an answer though.

I had similar - diagnosed with endometriosis which 6 years later was apparently gone, on further investigation it was found I had developed adenomyosis which has pretty much identical symptoms

I have endo and was told the staging (1-4) doesn’t really have any correlation with symptoms. You can have a tiny wee bit and have awful awful pain or be stage 4 with no symptoms! There’s no rhyme or reason to it.

Could it be adenomyosis, the symptoms are very similar?

A couple of people have said about adenomyosis. How did you go about getting that diagnosed? Did they say endo can heal itself or did it just turn into the adenomyosis?

I definitely had endometriosis as I have the pictures that show it, although yes it was only a little bit. Interesting to know about the staging vs pain levels. It could be adenomyosis but period cramps aren't always my worst symptoms- they can be horrific but it's mainly bladder problems that can be the most incapacitating and heavy/frequent periods

I was told in my case that after surgery to remove the endo then getting pregnant and having a c section that it was the likely cause of then developing adenomyosis. They suspected it as my uterus looked very ‘bulky’ on ultrasound and they looked at it with the colour on as well on the scan and said they could see adenomyosis

You should have a follow up appointment to discuss what they found or didn't find and what the next steps for you are. I was private so this happened to me, groggy brief breakdown of the surgery then booked back in to discuss when not groggy from anaesthetic.

I follow an endo surgeon on instagram (Dr Vidali) who specialises in endo found on the bowel, diaphragm, lung and bladder. He is in the US but performs several surgeries a day and shows the videos. He has reviewed people's MRIs or ultrasound pictures where they are told no endo and he is pointing to a mass around 10cm saying it is right there.

I don't think it is a case of you not having endo, I think it is probably a case of not having visible to the naked eye endo. It could be inside the bladder. I mean endo can collapse a lung and there is a UK woman on Instagram documenting her journey and trying to get NICE to change where endo can be found.

And yes you can be absolutely riddled with it and have no symptoms, or have a teeny bit and depending where it is be on the floor in pain with it. Plus because it usually takes over 7 years to get a diagnosis it can run amok inside unless you are being treated for suspected Endo. Endo used to be diagnosed with the laparoscopy now they are using MRIs more often. Less invasive and no risk of adhesions or complications from anaesthetic.

I was diagnosed over 20 years ago via a laparoscopy after years of being told I had a low pain threshold because other women didn't whine about their periods.

I think the main questions for you now are, how old you are, have you had children/plan to have children? What treatment have you had if any for that original diagnosis of endo? You are still in pain so something needs to be addressed.

Endo has even been found in eyeballs!! It’s such an awful disease and it makes me so mad at how little is known about it because nobody bothers to properly fund studies 🙄

Hi thank you so much for your comment.
I went and had a look at that Dr and have immediately followed him- really informative so thank you for sharing.

I am going to push for a follow up appointment to discuss further.

For context, I am mid 20s, I have one child and would like more in the future. Nothing was done with my endometriosis when they found it 5 years ago, so I was expecting it to have progressed quite a lot. I was given a mirena which I had to get out, so I had no hormones controlling the symptoms.

Wow! That's unbelievable, how is research into endo not well funded? It's a mind-boggling disease!

As others have said, there’s not always correlation between the amount and severity of symptoms. Ie you can have a tiny amount and be in a lot of pain and vice versa. Progesterone containing treatment seems to provide some relief. But the medical world desperately needs to focus more research on women’s health.

Yes unfortunately I don't get on well with progesterone treatments. I've had a jaydess and mirena both of which left me in agony, and I've had different versions of the pop pills.

I can't take a combined pill due to migraines, so feel a bit lost. Having it excised in my last surgery was sort of my last hope, but they couldn't find anything to get rid of.

Some people claim benefit from taking supplements like Coq10. Metformin also seems to be showing some benefits as a treatment, however I don’t think it’s mainstream in the UK at present so not sure it would be prescribed.

Yes I’ve seen more and more chat about metformin being used for endo. Also interestingly, as semaglutides have an anti-inflammatory effect on the body they seem to be working well with treating endo, so hopefully that might go somewhere 🤞🏼

That's really interesting re the supplements. Think I might have to wait a bit longer for any alternative medical treatments given I don't have a diagnosis anymore!

So is the general consensus that once you have endo, it's quite unlikely for it to just disappear?

Hi just an update as currently sat here bawling my eyes out!

I had to go to the doctor today regarding my fit note after surgery. Whilst there I thought I would ask about my next steps.

The doctor wouldn't refer me for a second opinion as she said a laparoscopy is definitive and there is no signs of anything pathological causing your bladder or period symptoms.

She diagnosed me with a dysfunctional uterus. Told me I won't want to go on any medication for my bladder as it is for old lady's and that there is no point going for any operation that will burn away the inside of the uterus to control bleeding as I may want to get pregnant again. She said to continue taken tranexamic acid and codeine when needed and tray colofac for smooth muscle relaxant during my period.

I feel totally fobbed off. :(

So my only options are the implant (the only contraceptive I haven't tried, as can't take the combined pill)

Oh she also said to try see it as a positive thing that I don't have extensive endo (which of course I do as I have seen my family go through it!) and that having endometriosis comes with risk. Of which I already know about.. 😢

@OP many cases of endometriosis are missed by Laparoscopies. No idea why. I had 2 of them, similar symptoms to Yours from teens ongoing for decades and they always came back clear. Finally at 50yrs, i couldn't take it anymore & asked for a hysterectomy, Consultant said he found stage 4 endometriosis and has no idea how it was ever missed..
Just to add, please exercise caution with Endometrial Ablation! I was told this would control the bleeding and pain, so i had it done. It did nothing, the pain came back worse than ever before.

Oh no! Gosh I don't want them to get worse. I will proceed with caution if that is ever mentioned again.

Wow cannot believe they managed to miss stage 4 endo, that must have been awful. I hope the hysterectomy did end up alleviating things for you in the end, though you shouldn't have had to go so long with these unbearable symptoms.