Do I have Endometriosis? Please help

[Carley321]

Hello. Going a little loopy here and just looking for some other opinions, symptoms and stories!

I came off the pill a year ago. Been ttc ever since. Iv had irregular periods since but the last 3 cycles have all been under 35 days which is good? But since my cycles have been more regular, I am noticing an occurring pattern.
I have a dull and uncomfortable ache in my right lower side of back and side/hip (pelvic area) the ache can run down my leg and just causes sensitivity and discomfort more than anything. It gets particularly uncomfortable around ovulation up until my period.
I also have brown funk before and after my period this time for 3 days before.
I am also usually Ill around ovulation (right side mostly) and this month was actually so dizzy and nauseous that I had time off work.
I am not by any means in horrendous pain but the pelvic area aches are noticeably there and can be unpleasant.

My doctor mentioned endo and said she’d refer me to gyaene.

I am so frightened and anxious (I suffer pretty badly with anxiety). If there is anyone who can share their advice and stories positive and otherwise please please do. X

I had similar symptoms you described but I had an ovarian cyst and also adhesions from previous surgery. My ovary was attached to my uterus causing considerable pain.

I had surgery 2 weeks ago and about to ovulate the next few days so hoping the symptoms are gone.

Has your doctor sent you for a pelvic ultrasound first?

Oh dear that sounds painful. How did they diagnose it?
Yes I’ve had an ultrasound and an internal ultrasound, so am I right by saying cysts would have been picked up then?

Cysts would be picked up on an ultrasound but endo usually isn't unless there's a big mass.
To find endo, they usually do a laparoscopy.

My endo was missed for years as ultrasounds kept coming back fine but when I had my lap, they found it and an adhesion.

Hi OP

I have endo, I’ve had 3 surgeries for it now. It took me 10 years to get formally diagnosed (diagnosed since 2015), and the only way to obtain a true diagnosis is a laparoscopy. Laparoscopies are generally nothing to worry about and if any endometriosis is found, they’ll deal with it there and then.

I had pelvic floor and back pain for years, periods were super heavy and painful.. the pelvic floor pain was because they found pus and fluid trapped in pouch of Douglas area, touch wood I haven’t had this since. The fluid was found on an ultrasound prior to surgery, so sometimes this is an indicator of endometriosis, as the bleeding from the adhesions during your period has nowhere to escape.

If the gynaecologist suspects endometriosis then they’ll recommend a laparoscopy.. if the adhesions haven’t fused organs together, it is a relatively straightforward procedure and recovery. Endometriosis can sometimes come back if no medication is used to make it dormant, such as Leuprorelin or the pill. I wouldn’t ever personally recommend the Leuprorelin injections but I had a terrible experience of them.

My last surgery was June 2018 - which resulted in my first pregnancy very shortly after (sadly didn’t result in a healthy baby but that’s nothing to do with the surgery or the endo), and my symptoms are manageable and seem not too bad at the moment! Lots of ladies conceive naturally with endometriosis, especially when it is mild to moderate and scarring is minimal.

Best wishes to you OP, I understand it’s anxiety provoking and not a nice thing to have to potentially deal with, but it can be treated successfully and managed relatively well with a good gynae! x

Oh and I get pain quite badly during ovulation! They did find some adhesions on my ovaries last surgery, but it’s not unusual to get ovulation pains and feeling a little off when you have endo in that area.

Hey,

Generally cysts are seen on ultrasounds. With endo it can only be properly diagnosed with a laparoscopy. I had a large cyst 10 years ago, had surgery and part of one ovary removed. I now have suspected endo as what they think is an endometrial cyst was found. It's size isn't worrying just my previous surgery and they don't want to risk the cyst getting so big. I'm due to have a lap next month and can't wait to finally get answers. Like you I get pain around ovulation. It's a lengthly process in my area, so hopefully you'll have some answers soon!

They'll definitely diagnose during a laparoscopy, which although classed as minimal invasion it's not without risks.

They told me I didn't have any endometriosis.

My cysts were diagnosed through multiple ultrasounds to monitor size and growth.

Adhesions picked up during the laparoscopy which I'd had before

Hello all. Thank you so much for replying it’s made me feel less alone in it and all the ‘am I going crazy’ with the symptoms.

I seen a gynae yesterday (a follow up appointment from an initial consultation for ttc) she didn’t seem at all concerned and sounded almost sure that it’s not endo. But I’m just not convinced after doing my own research. As soon as I came from there I had terrible nausea and awful burning in my upper stomach? Didn’t sleep all night and still here today. I am currently on CD3. Could be acid or could it be something else? I just seem to feel like shit more often than not and it really is messing with my head!