Endometriosis concerns - terrified

[Poppins88]

I have been experiencing mild to moderate pelvic and lower back pain for a few weeks at the end of my period since late November '20. A few years ago I can remember feeling pain during sex but I put that down to how infrequently my partner & I had sex and how unaroused I was. I went to see a doctor and was diagnosed with IBS. Other than that, periods are a bit light but not unusually painful and no other symptoms. I was told today by my doctor that he thinks I may have endometriosis and he is referring me to a gynacologist. Its broken me tbh. I have always had a fear I was infertile since I had a termination when I was 19 and this feels like literally my worst nightmare coming true. I'm single atm and was going to try and get back into dating, I was already feeling apprehensive that I'm not much of a catch (don't own a house, 33 e.g.approaching mid thirties, history of depression/anxiety) and if I'm going to have fertility problems on top of all that I can't imagine anyone wanting me.

Not sure what I'm looking for. Is there anyone who has experience of this and can offer some guidance/advice perhaps?

I was diagnosed with endometriosis some 20 odd years ago. I have had two children (17 & 11) - both pregnancies followed surgery to treat it.

Yes my was diagnosed with laparoscopy but I am unable to have an MRI due to other medical reasons. It’s is intrusive operation and I have had to have one literally every 5 years for treatment but since the coil It’s now being managed well. And not needed for 7 years!

I do now I’m in my mid 40s have a lot of scar tissue but have the mirena coil which has helped hugely with the management of it.

Laparoscopy dangerous? First I’ve heard of it.

My endo wasn’t visible on vaginal
Ultrasound but found on laparoscopy. They then immediately removed stage III endo.

Three pregnancies, two babies though my first baby took a year to conceive and the second just a month.

Bonus - I’ve also been relatively pain free since my endo op.

Worrying won’t change a thing but stress sure as hell can affect conception. Your chances are still very good!

I'm sorry I don't have any advice for you regarding your latest message, OP, but just to add to the chorus of experiences - a friend of mine was diagnosed with endometriosis in her twenties, when they did the surgery to remove it they found some on her diaphragm so quite extensive I believe. Her doctor told her that if she wanted to have children it would be better to start sooner rather than later, which she said made her feel "even shitter about being single" (understandably, I sort of see the doctor's point but still not very well handled!).

Anyway she got married in her thirties and had a baby a couple of years later, as far as I'm aware they didn't have any fertility treatment. So there are obviously nice guys out there who aren't put off by an endometriosis diagnosis in a potential partner, she met him years after her surgery

Friend has endo

She has 5 children

@Poppins88 endo runs in my family. They didn't even do an mri for me they just did the laparoscopie (if that's how you spell it) it's not that dangerous. They'll look directly into your womb.

For me it turns out I had interstitial cystitis in the end. But I'd just ask for that one. Fibroids are fairly common though.

My sister has endo though and 2 pregnancies and one lovely son. She manages it through fitness and diet. (Dont feel bad anyone if you don't do this she's a fitness instructor)

Thank you for the replies everyone. I will go ahead with the laparoscopy and just hope for the best.

To be succinct, I have endo, diagnosed 20 years ago. Had lots of treatment meds including chemical menopause and HRT finally a laser lap and dye (laparoscopy). Gynaecologist saw I had lots of endo deposits. Told me it was really bad and that one of my ovaries may not even be able to function due to scar tissue.

Back for check up 3 months later, endo back with a vengeance. He apologised, said it was rare. Told me I would need IVF to have children, start trying now so they can write on medical notes that we did so that in 6 months they can put me on clomid and then 1 year start IVF. Not to worry though because it will never happen naturally.

Reader, I was pregnant in a month. Naturally. Went on to have a second child a few years later which took a few months to conceive. Endo pain not so horrific, managed with TENs machine but I suffer from fatigue every day and I cannot work. I have a very supportive Dh. So even though I was told IVF I didn't need it.

Laparoscopy is not a risky surgery I cannot comment on the hyteroscopy and I don't know if the fibroid adds to any risk. However, there are higher chances of adhesions from a laparoscopy which is why they tend to do it as a last resort, that and also cost for the NHS.

Hiya. I've had two laps, and have two naturally conceived children.

Whilst all surgeries carry risk, the lap is usually a day procedure and keyhole. It's also the only definitive way to diagnose endo.

Unfortunately, the lack of care for endo doesn't stop with diagnosis - the more radical treatment like ablation is still quite hard to access, and you'll hear a lot about preserving your fertility.

As I'm done having children (I'm 34), I'm in the stage where they don't want to do hysterectomy as I'm a bit young for HRT long term and they are reluctant to do it or ablation as I might "change my mind and want more kids". As it worked out, I have a mirena and I take the mini pill too and I have no periods at all, no symptoms of them either (bloating, mood changes etc) nothing at all. It's bliss, frankly.

"Hi everyone, I've gotten my results back from MRI and I'm a bit confused by what I've been told. The lady said I have a small fibroid on the lining of my womb, she was quite dismissive about it and said it was nothing to worry about. She then said, "Good news, we didn't spot endometriosis on the MRI, so we'll just keep you on progesterone and no need for a laparoscopy." When I challenged that and explained my understanding was that you very rarely find endo on an MRI and I need a laparoscopy, she said, "OK we'll do a laparoscopy and a hysteroscopy but we might not find anything and it can be a very dangerous procedure so we're not keen on doing it but if you insist..." I'm now left feeling that I'm overreacting/putting myself at more risk by pushing for a lap but all my research tells me you can't diagnose endo any other way?"

Hi Poppins

I would put in a written complaint to PALS about this person if you were treated in a NHS hospital. Regardless of where you were treated I would complain anyway; you were given duff information here.

The fibroid/polyp on the lining of your womb could potentially pump out hormones that affect ovulation; that needs to be removed (and that can be done laparoscopically).

Laparoscopic surgery is keyhole surgery which has been performed in this country for many years. Its the usual way of diagnosing endometriosis. DO not be further fobbed off by poor advice.

Its not a death toll for fertility infact its encouraged as some one's endo improves after a pregnancy. Mine did.

@AttilaTheMeerkat Tbh I'm just so drained by the whole thing that I'm not sure I have the energy to complain. I've spoken with my GP and asked if I could be referred to a BGSE hospital near me but he's told me to wait until I've had the laparoscopy as presently I don't fit the criteria. I'm not sure how I go about asking for the fibroid to be removed, the lady pretty much rushed me off the phone and said she didn't want to remove it as it was small and in a place where it is not causing an issue. I asked her if the fibroid could be the source of the issues I'm experiencing (pelvic ache, lower back pain, twinges in legs) and she said no. She did also say she wants to put a mirena coil in when she does the laparoscopy, so mulling that over. I'm just generally fed up. Since I've been taking the progesterone only pill the last 6 weeks or so my very light periods have now become very heavy and I've bled pretty much every day this month & I'm experiencing period pain which I never did before. I'm pretty sure that's the exact opposite of what's supposed to happen? Just don't understand why my body has decided to turn against me like this out of nowhere.