Possible Endo without too much pain?

[LouiseExeter]

Hi all,

After TTC for a long time and spotting a week before my period every month, I had a scan taken and was told they could see a possible endometrioma on one ovary and other abnormalities on one side of my uterus. I’ve since seen a really great private consultant who wants me to have a hysteroscopy and laparoscopy at the same time, and he seems pretty certain he’ll find Endometriosis. My main symptoms are infertility, bad lower back pain during the first days of my period, spotting a week before period starts, heavy period for the first 2 days, and mild internal pain going to the toilet. Everything I read about Endometriosis mentions severe pain not just during your period and I’m worried that my pain isn’t bad enough to be Endometriosis. Has anyone had an Endo diagnosis with these sort of symptoms? I’m contemplating cancelling the procedures because I’m worried they won’t find anything.

Thanks for your help!

[Elsidee11]

hi, yes it is very much possible. I have stage 4 endo and minimal pain. Similarly to you I have 3 years of infertility, fairly light periods and pain occasionally when going to the toilet. I really recommend having the lap done, especially if you are TTC. Good luck x

[LouiseExeter in reply to Elsidee11]

Thank you, that’s really helpful to know. I was worried that my symptoms were just normal period related symptoms but knowing that you can still have it with minimal pain, I’ll go ahead with the laparoscopy. X

[butterfliez]

hi yes definitely can have endometriosis with minimal pain , I had a large endometrioma on my ovary , had a laparoscopy & was diagnosed with endo.

I never had any of the typical symptoms my pain was minimal & periods only slightly heavy for a day or two , short cycles , pain when going to toilet.

I think definitely worth having the surgery to confirm a diagnosis & remove the endometrioma especially if you are trying to conceive x

[LouiseExeter in reply to butterfliez]

Thank you for your reply. Yes, I think the consultant was keen to remove what looks like an endometrioma so hopefully that will help my fertility. X

[butterfliez in reply to LouiseExeter]

Best of luck with everything ahead, keep us updated with how everything goes. I hope you are not waiting too long for the surgery x

[PaintToughTed]

I was diagnosed with stage 4 severe endo via hysteroscopy and lap last summer (I’d gone in because i’d had a polyp show up on an ultra sound that I wanted out). The consultant was also was sure I’d have endo despite neither me nor my GP having flagged it. Honestly, reading the symptoms list now none of it applied to me. The only one, possibly, was about period pain preventing you from undertaking normal activities, but even then - I had bad period pain, but could dose on paracetamol and ibuprofen and carry on. So even that symptom never really felt like it applied to me. I thought endo pain would be a lot worse than what I experienced.

This is a really tricky and sneaky disease that progresses the longer you leave it and presents in pain terms in wildly different ways to different sufferers. Getting checked out given your symptoms is no bad thing and could save you from needing much bigger surgery in future if they do find something.

Wishing you the best of luck x

[Snoopydraws23 in reply to PaintToughTed]

This is so similar to me and my symptoms or lack of! X

[LouiseExeter in reply to PaintToughTed]

Thank you for sharing this , that’s really helpful to know. I was previously told by a gynaecologist I saw via NHS that she didn’t think it was Endo because I didn’t have enough abdominal pain and so I think that’s what has put doubt in my mind. I’ll go ahead with the lap and get everything checked out X

[Snoopydraws23]

Hi,

Yes, I have severe stage 4 endometriosis, my uterus is tethered to my bowel but I’m pretty much asymptomatic. I have bad period pain on day one of my cycle but this can be simply managed with paracetamol/ ibuprofen. Mine was only discovered during a laparoscopy to investigate fertility issue. I had no idea that it was that which was causing my infertility.

We decided not to have any surgery to remove the endo due to having no symptoms and although it hasn’t been easy, I have been very fortunate to have two successful pregnancies via IVF.

I would definitely recommend the laparoscopy. Good luck with TTC. X

[LouiseExeter in reply to Snoopydraws23]

Thank you for sharing this, it’s helpful to know other people are in the same boat. That’s great that you had successful IVF, fertility is my main concern so I’ll go ahead with the laparoscopy and see what they find. X

[BlueGiraffe9]

Me too, my symptoms were similar to yours. While my pain was awful during period I was ok in between just had spotting at random points in month.

[LouiseExeter in reply to BlueGiraffe9]

Thank you for sharing this, I’m surprised with how many people have similar symptoms, and I shouldn’t have doubted the possibility that it could be Endo.

[BlueGiraffe9 in reply to LouiseExeter]

To be fair I didn't realise I had other symptoms until after the laproscopy and removal of a 15 cm endometrioma. For example I was so inflamed I was retaining a lot of water and that dropped off, my energy levels massively improved and my anxiety massively improved. My periods are now pretty much painless too. Symptoms can vary massively and if you'd asked me at the time I had just accepted many of mine as normal period symptoms!

[Starry1977]

another stage 4 here with minimal symptoms and pain. I'd describe it as discomfort more than pain and my insides are all stuck together.

[Katkan]

Hi LouiseExeter, ever since I started experiensing infertility, I knew I might have endo, because my mom has. I have spotting at least a week before my period and had pain when going to toilet. No other symptoms. They ended up finding endo and exciting it. Still TTC, but no luck yet.

[Tricky19]

Hi, another stage 4 plus DIE, one endiotroma in each ovary and plenty of fibroids. diagnosed last October in A&E and if you had asked me the day before, I would have said I was perfect I’m this part of the body. My periods always have been painful for 2-3 days, managed with paracetamol and iboprufen. However, My legs and back painful, diagnosed with fibromyalgia, other issues I may now link to this, but no one asked for endo.

My laparoscopy is this coming Friday, looking forward it because after the flare I had,I have been in pain every day…different levels but every day.

[LouiseExeter]

Thank you all for your help here. It’s definitely reassuring to know other people are experiencing the same levels of symptoms and I’m not overreacting. I’ve just signed the consent forms for the laparoscopy and hopefully it will be going ahead next month.