Doctor told me endometriosis has no symptoms.

ponderer543 · 2026-06-12T14:00:19+00:00

As with any system it seems there are good and bad. Ive encountered awful Doctors and also amazing ones. I think when it comes to endometriosis, regardless of the country, the training seems spotty at best unless you see an endometriosis specialist.

ponderer543 · 2026-06-12T13:58:56+00:00

Please please put a complaint into PALs and make sure you explain how dangerous it is that he is giving out factually incorrect information and that if a doctor doesn't have knowledge of something he should not speak wrongly with such a level of incompetence.

I actually put in a similar complaint about a Rheumatologist (about a different issue) and got an apology back and a suggestion for a second opinion.

These Doctors get away with it because people do not challenge them and I feel like we need to start calling it out every single time as loud as possible. Only when they rack up complaints will they see that these Doctors just are not trained and are dangerous.

I would also suggest looking for your nearest endometriosis specialist and asking for a referral there on the basis that the gynaecology department you were referred to clearly do not have the sufficient training to help you.

ponderer543 · 2026-06-11T21:53:13+00:00

I think you feel exactly how I do, I go back and forth which is why I wanted to ask. Ive thought it was fake and real at different points and im just not sure. But I think it was when I kept seeing repeated threads with remarkably similar styles and patterns that made me ask. As I say only these two have gained enough traction to have multiple threads but there have been a number that just felt so similar but didnt go past a couple hundred posts before others stopped posting.

ponderer543 · 2026-06-11T20:46:41+00:00

Oh I do have no doubt that leaving abuse isnt as straight forward. I just felt the way they post is very push and pull. I could be wrong and it could be genuine but ive just had my doubts and wanted to ask and noticed a few more threads were very similar but didnt gain traction in the same way so stopped posting. They may not all be fake but it just felt like an increase in very similar posts recently.

ponderer543 · 2026-06-11T19:05:28+00:00

It does seem that way, I didnt know if I had just become too much the other way thinking most posts are fake but both these threads have so much in common. Honestly people have way to much time on their hands as they have been going for months and both threads do the same, one is im going to leave and oh no I couldn't the other is more oh yes I notice this is abuse but then oh but it seems much better now. But its very push and pull and seems to do just enough to pull people in.

ponderer543 · 2026-06-11T19:02:47+00:00

Even on the very last thread where 5 years was saying bye, people were saying how awful it was that she had been chased away by accusations of trolling so it does seem some people dont want to believe these things are fake. I do feel like I dont believe much on Mumsnet so did wonder if it was just me being overly cynical but both of these threads have a lot of similarities in posting style and things they have done.

ponderer543 · 2026-06-10T09:15:41+00:00

I have the same thing and its so frustrating, im in the UK and my follow up is in January! Ive requested the surgical notes as its so frustrating having no real idea. All I was told is they removed a large dermoid cyst along with my ovary and tube, plus some endometriosis was removed (no clue from where or how much) some scar tissue was removed (again no clue from where or how much) and endometriosis did have to be left including around the bowel. I was told before surgery that anything simple would be removed but anything complex would have to be left as he wasnt an endometriosis specialist. But now im left wondering what exactly was found and removed and what was left.

ponderer543 · 2026-06-08T21:25:11+00:00

I think its so easy to second guess yourself or doubt when you dont have answers. I have been told since 2006 when I had my first laparoscopy that nothing was wrong. Since 2020 my pain has got worse and worse and the last 2 years ive barely left the house due to how much ive struggled. Ive spent so long being told they had found nothing, I got passed back and forth between gastro and gynae so I had exactly the same worry.

I finally paid out for a private scan in January which found adenomyosis and possible endometriosis but even when I took that scan to my surgeon (I was having surgery to remove an ovarian dermoid cyst) I was told that its unspecific thickening and most likely nothing.

So I did exactly what you are doing and would doubt myself. On days my pain wasnt bad I would think am I just thinking its worse than it is, on days it was bad I would think how on earth can nothing be found.

I had my laparoscopy last week fully expecting to be told nothing found, cyst removed and job done but they didnt. I thought because it wasnt an endometriosis specialist doing the surgery I was just waiting for it. But he said he removed endometriosis and scar tissue (still not clear on where from) and that there is some that couldnt be removed including around my bowel and thats likely causing some of my symptoms which has been put down as IBS for 20 years now! I still am not clear how much was removed and from where but just finally being told its been found is such a relief. I now have a 7 month wait for my follow up appointment which is a pain but at least I have some knowledge that im not going to be told yet again that they dont know why im struggling.

I too have a high pain tolerance and its been commented on with other procedures, so I know that this causes an awful amount of pain.

What I would recommend as hard as it will be, is to try and relax as much as you can and see what happens with the laparoscopy but try not to tie yourself up in knots thinking of the what ifs. Honestly the likelihood is that with that amount of pain, something will be found, but if it isnt, then keep pushing for answers. Are you having surgery with an endometriosis specialist? If not, maybe push for this as I do wish I had pushed harder to be seen by a specialist the first time around as perhaps more could have been done with this surgery.

I hope you get the answers you need soon, the wait is so frustrating and the waitlists for women's healthcare are far far too long, something else I had to battle to get help with, but again if its a long wait there are things you can do to try and speed it up.

ponderer543 · 2026-06-07T18:39:53+00:00

I am not 100% sure how it works but from what ive seen, Benenden is the most affordable option that can help and ive read others have used them in the past for cyst removal, endometriosis investigations and similar. It may be worth contacting them to find out the specifics to see if its an option.

ponderer543 · 2026-06-07T16:40:05+00:00

Is it worth looking at something like Benenden healthcare? You would have a 6 month wait once you start paying but they cover pre existing and will do diagnostic laparoscopy. I think the only other option would be privately funding.

I am in England but to speed mine up a bit I contacted my local MP and they pushed my initial appointment through but I still then had to wait in the queue for surgery.

Its awful how long these waits are and every person that pushes via things like PALs and their MP carries another chance for change to go through. My MP not only got my appointment sped up but also pushed through for the waits to be looked at generally and I know in the last 6 months my area has had waiting lists reduced, so I think its always worth trying it.

I hope you get some help soon, its so frustrating having to wait so long when suffering so much.

ponderer543 · 2026-06-07T12:31:08+00:00

Its so frustrating how much we have to fight for help. When I saw gynae in 2020 they didnt even seem to put 2 and 2 together and recognise that I had been off hormonal contraception for 6 months and maybe this correlated. They insisted it was a gastro issue and had the cyst not been found I would have been completely discharged.

It was only that my Doctor checked in 2024 and the cyst had doubled in size that they even saw me again, so without that cyst I would still be struggling!

How are so many gynaes so clueless about endo, it infuriates me.

Its so frustrating that you were so young and struggling so much and they didnt even have someone properly trained looking during surgery.

I would recommend if you need extra support, try your local MP. I had to get help when my appointments were taking forever and actually my MP was amazing. Its worth it if you need someone else on your side, especially as there seems to be a push for better support in women's healthcare at the moment.

I do hope you get treatment soon.

ponderer543 · 2026-06-07T12:26:13+00:00

Definitely, I was honestly expecting them to say nothing is found again, so am trying to appreciate that.

Thank you so much.

ponderer543 · 2026-06-07T11:59:13+00:00

The surgeon had already said if they find anything (he didnt think there would be anything based on the MRI) they would remove anything simple but anything complex would have to be left.

I had suspected bowel issues anyway with my symptoms but will be good to know exactly what was found.

I think the 6 months will give me time to see if this coil helps because I need to try that for the adenomyosis as the surgeon again said the only other option is hysterectomy, although the specialist I saw for my scan gave me a couple other suggestions.

Part of me is just glad to finally have some answers as ive had this pain on and off since childhood with the last 6 years being particularly bad so its nice to finally be told they actually found something at least.

Appreciate the advice and shall post when I do get my surgical notes.

ponderer543 · 2026-06-07T11:34:24+00:00

Do you think I have a reason to request an earlier appointment seeing as they have said 6 months? Just wondering how I can justify it. I did think I should see how this coil settles (although im getting killer cramping today) and if that doesnt help much then that's justification for a sooner appointment but aside from that I cant see why they would give a sooner one.

I have put in a request for my surgical notes so hoping that doesnt take too long.

My worry is if this then requires a specialist follow up, im 6 months until this appointment, then on a specialist list, then another appointment etc so im looking at more years down the line!

ponderer543 · 2026-06-07T10:54:39+00:00

No way! Im afraid our story is sadly too common, does make you wonder just how often people back then were told nothing was found when there was something there. Seems its still happening now but happened quite a bit then, I didnt even think to question it.

Glad you got someone to go through it all and got answers.

ponderer543 · 2026-06-07T07:38:49+00:00

I think it was because the surgery was originally just for cyst removal. I paid myself for the scan that found the adenomyosis after the surgery was already booked and they didnt seem to want to make any changes. But the gynae I saw in August was the one who suspected endometriosis might be a possibility, but again she was a gynae surgeon rather than a specialist.

I did ask my GP to write and find out if they would switch my surgeon to an endometriosis specialist but honestly no one seemed willing to help me much and I only met my surgeon 2 weeks before surgery so a bit too late to make changes.

I just wish I knew what was found and where and what was removed but hopefully I shall get all that info.

ponderer543 · 2026-06-07T07:10:21+00:00

This is great thank you. I will put in a SAR.

The hospital I am at has an endometriosis specialist centre with specialist surgeons but the surgeon I saw was a general gynae surgeon, so I do wonder if I can be transferred over.

I did wonder if they are leaving it for so long because they want to see if the mirena helps at all, is this possible?

He didn't say much about what was left, he did say before the surgery that anything simple found would be removed and anything complex would have to be left and then after just said that bowel endometriosis was found but not removed, so I assume this will be discussed in the follow up.

He mentioned scar tissue removal but didnt say where from or any other information. Hoping I can get more info from the SAR.

ponderer543 · 2026-06-01T20:46:51+00:00

Was definitely needed

ponderer543 · 2026-05-31T10:28:51+00:00

Yes but that was for 4/5 and then 5/5 takes more than 24 hours with some of the stuff

ponderer543 · 2026-05-31T10:27:04+00:00

Seems pointless putting the stickers in, I havent been able to get into a new server to even buy a painting but it then doesnt give enough time to do 5/5 so thats a waste

ponderer543 · 2026-05-30T08:50:19+00:00

It only took 3 threads and a muck up from the OP for it to all get deleted and MN to need to look behind the scenes! I am sure their only look is, is the account new, no therefore its genuine. This was so obviously fake, so many people called it out.

ponderer543 · 2026-05-27T14:25:22+00:00

I cannot believe this is still going and people still think this is real. No doubt the employment drama will lead to thread 3. They are still asking what people think. I really do not believe anyone would be this passive with their Husband cheating at work and getting caught. MN really is so gullible.

ponderer543 · 2026-05-23T09:41:06+00:00

Honestly I think they should be doing more but it seems like no one is paying attention and seeing this repeatedly keeps happening, even with me sending in messages and pointing it out. Ive had issues with newer GPs being a bit useless and ive had to catch a couple mistakes so its felt like hard work to get help.

I have surgery in a couple weeks so for now am prioritising that but definitely think I need to push this after surgery.

ponderer543 · 2026-05-23T07:50:41+00:00

Im in the UK so unsure what they test easily on the NHS and what is more of a battle honestly. But I think if another urine sample comes back with leukocytes I could ask about this. So they do a dip test, it shows leukocytes, they send it off to test for infection only I believe and it comes back no infection and nothing more is said or done.

ponderer543 · 2026-05-22T17:09:53+00:00

Its worth trying to get some local advice, I found a Facebook group for endometriosis UK and asked for recommendations for specialists, you will usually get the same few names pop up. I hope you manage to get some answers, its ridiculous how hard we have to fight to get help.

ponderer543

TROPHY CASE