Does this sound like Endomitriosis or something else?

[longshot]

In the interests of not boring you all to deaths I will try to summarise...

Periods age 14-18 - normal, pretty painless
Periods age 18-23 - on the pill but light and not painful
Periods age 23-30 - heavy, painful, no hormonal contraception, given Tranexamic acid to deal with. No tests ever done
Periods age 30 - 38 - Post children, heavyish but less painful

So now at just 38 for the last 4 months I have had:

Period pain all month, literally have abdo pain every day, much worse from 5 days before period, during period and at the end of period, also horrendous during ovulation for 2 days, v painful to go to the toilet also. Not always requiring medication all month but always 'there'. Bloating most days, VERY heavy periods, loads of clotting (sorry TMI), mood swings, exhaustion, spotty, greasy hair at times, spotting various times in the month, mostly mid cycle.

Been to see Dr, have had blood tests, all normal accept had a slightly raised CA125, sent for an ultrasound on pelvis, normal so not ovarian cancer. No cervical tests done or swabs.

They have no idea, told me to come back in a month if it's not subsided and gave me some Tranexamic acid. I am starting to feel depressed about it. Constantly in some level of pain and spotting.

Has anyone experienced anything like this and can help me ask the right questions, seek some treatment?

I don't really want to go onto hormonal contraception as did so in my teens/20s and it made me depressed but I would consider it now I feel that bad. Seriously stressed I have some sort of undiagnosed cancer :-(

Periods also suddenly much longer, light sort of 'old blood' for 2-3 days and then 7 days heavy bleeding. Have been diagnosed as anaemic which I guess is no surprise.

Endo cant be diagnosed on scans. Have they suggested a lap?

Did the T acid help? I found it didn't, but mefenemic really reduced the bleeding.

I don't have diagnosed endo but I have pain, terrible periods etc but they don't want to do a lap as 'it's not bad enough'. FFS. Been offered an ablatation to help the bleeding but consultant did not recommend it due to my age, is that something you can ask for?

The T acid helped when I was younger, I have only just been diagnosed it again so will see this month but hope it will help a bit.

It's more the symptoms between periods that are getting me down as it just feels constant and I keep worrying that it can't be normal. Arrrrghh!

This could be me! Sudden horrific period pain and had bleeding mid cycles mid 40s. Had scan which fine and no ones seems bothered. Still on extra strong painkillers with no end in sight. Noones mentioned endo as possibility even though I know it can’t just be found on scam. Don’t want go back and keep asking when they just roll eyes and say scan was fine and well painkillers should be helping.

Reading a few posts on here it seems a lot of people suffer with similar-ish things but I agree Akire, seriously depressing to think there's no solution. Obviously I don't want to be in a position that I HAVE to take painkillers forever without even knowing why.

@Akire Out of interest did they just do Pelvic Ultrasound for you or anything else?

No just pelvic. I was down for trans vaginal but she said well uterus is fine so no point as unlikely to show anything “unless I really wanted one” which of course I didn’t and trusted her opinion. I need go back and nag but currently having nag and push for other things and feel so silly being non medical suggesting things when they are supposed to be trained ones.

My periods were crippling from when they first started age 9, the only time they weren't painful was when I was on the combined pill from 18 to 35, after having ds they became increasingly heavy & a lot more painful, I also developed bowel problems in the second half of the month, cramps, being stuck in the toilet for 2-3 hours every night with diarrhoea & cramps that were as bad as labour pains, it started every evening as I was eating my tea, I would end up vomiting whatever I had managed to eat & afterwards have to go to bed because I was exhausted. My periods were lasting longer & longer, getting so heavy that I was flooding & passing huge clots, I was in pain 3 weeks out of 4. I kept on telling my GP but got the usual answer, it was my age, I was perimenopausal & it would pass. It took me collapsing & ending up in A & E with what they thought was an ectopic pregnancy for anything to be done. After an ultrasound that didn't find an ectopic pregnancy, I was referred to a gynaecologist who did a laparoscopy & found my tubes & ovaries were almost grey, my tubes were totally blocked & I had an ovarian cyst, he originally diagnosed pelvic inflammatory disease, but after a further laparoscopy to remove my tubes, 1 ovary & the cyst, he found endometriosis, the area behind my womb was all stuck together, I also had adhesions on my lower bowels from the endometriosis. He put me on Norethisterone to stop my periods & asked me to think about a hysterectomy. At the time I didn't want to consider one, my marriage had broken down & I was with a new partner, I still wanted the option to have another child through ivf, it took another 6 months until I got my head around the fact I would not be having any more children before I admitted defeat & agreed to have the operation.

Honestly, please go back and nag. It's terrible that women are just expected to put up with regular pains this way. I'm only mid 30s and they've suggested I wait til peri/menopause before any surgery on vague reasoning. Can you imagine if a bloke was told, 'hey just put up with it and wait in agony every month for the next 15-20 years to see what happens'?!

Have had many of your symptoms and fought for internal scans when pelvic was clear (more than once, years apart). I had blood filled cysts on ovaries, which after more determination was investigated with laparoscopic surgery.

With gynae stuff it's really important to advocate for yourself, we wouldn't have to push this hard but don't just settle for "wait and see" or "its your age". Good luck.

All your symptoms are suggestive of endometriosis being present rather than some undiagnosed cancer. Not being diagnosed to date is unfortunately not uncommon at all when it comes to endometriosis and this whole issue is well outside a GPs general remit. I feel most strongly you have been messed about (no-one has tried to determine why this is happening, they have just tried to treat the symptoms by giving you pills instead) and fobbed off.

Ultrasound scans do not detect endo if it is there. I have had more internal ultrasounds than I care to mention and none of them detected the endometriosis that was lodged in my uterine cavity. It was cited throughout this whole area; it took laparoscopic surgery to see it and deal with it all (mine was diathermised out).

Would agree with the suggestions made to go back to the GP and nag them to be referred to a gynae. Do not take no for an answer. You will indeed need to be persistent in order to get answers.

Be your best advocate here.

Endometriosis can also cause heavy bleeding to arise during menses (I remember flooding on occasion). Also dark stringey bits of blood can also be indicative of this.

Painful periods like this are not normal and it is not something that you should at all have to put up and shut up with.

Have a read too of this website www.endometriosis-uk.org/

@longshot mildly raised CA125 is a diagnostic marker that can indicate endometriosis once cancer is ruled out. Along with your other symptoms you have a good reason to ask for referral.

Hi all, I am so glad I found this post! I am 27yrs old, my periods honestly..... I am in so much agony every month!! I get clots for most of the days I am on, I feel so sick/nauseous, I get hot flushes, when going number 2 that’s sooo painful and I feel like my insides are being ripped out! I have gone to my GP and I believe she’s referring me for a transvaginal scan and testing bloods for CA125.

I am worried because my Nan has ovarian cancer in her 30’s and my mum & mums sis (my aunt)had their menopause’s in their 20’s!!!
I will keep you posted on what my investigation brings.

Just thought I would update this as saw your post Missademix. I feel for you! It does sound similar to pains I have had at times. I don't know if you already have children but I can say that between my late twenties and the last year or so my periods got less painful, still heavy but definitely easier generally.

Anyway an update: I have had a very hard two weeks! I went back to the Doctor as have been having brown discharge most days (not every day) and also pelvic pain every day really, it's really ramped up now as I am maybe 3 days pre period and seriously bloated etc. Anyway she immediately referred me and I am now on the 2 week wait for hospital. In between all of this she also did a quick (and I mean 5 seconds!) internal look with speculum and said 'all looks fine'.

So I am pleased they have refereed me but have daily spotting and the pain is really annoying. I would describe i as being all over my pelvic area below and mainly to the left of my belly button. It also feels sort of heavy and achey between my upper thigh area, i guess very low down in my uterus. I am very concerned that I might have cervical cancer, mainly as in my late 20s I have treatment (Llets for CIN1) and although all smears are up to date and have been clear since then I can't help but worry myself sick. My last one was 2017 and my Dr said she's not allowed to give me another (??) I have read so many people's stories of an ultrasound not showing up cervical cancer.

Anyway I will keep updating as I know how useful it is to come across these threads and hopefully in the end my diagnosis will be something that can be treated.