Know anything about endometriosis?

[Ayeshaxxx]

As I sit here at 4am in the bath after being woken up by pain, I’m feeling really fed up.
People don’t really speak about periods so I’m trying to understand if mine are normal.
My periods are crippling with a blunt stabbing pain that comes every few minutes, they are heavy and I often have embarrassing situations even when using night pads as I’ve leaked on clothes/bed sheets. I often throw up, and when I urinate on my period, the toilet water goes dark red (sometimes black looking) I just seem to lose a lot of blood. When I urinate it really stings, as if the blood is making my urine acidic?? I’m not sure, it’s almost like a uti but it goes when my period does. I’ve also had fertility issues, 4mc, no kids.
I’m just wondering if this sounds like any period related condition such as endometriosis or something I need to get looked at by a professional or would I just be wasting their time? I don’t know anybody with endometriosis to speak to about the symptoms. I worry about my reproductive health, things just don’t feel normal. For years I’ve been on the mini pill just to avoid having a period altogether as they’ve always been like this, but that’s not an ideal long term solution for me.

Thanks in advance x

[Ginfilledcats]

I'm no expert, but that sounds way more severe than my experience of periods and that of my friends whom I've spoken to.

I would do some research on the endometriosis website but yes ultimately please see your gp. I'm sorry you're feeling so rotten and have to experience this. I'm sure someone else more knowledgeable will be along soon but didn't want to read and run.

[Ayeshaxxx]

@Ginfilledcats
I’m so happy someone else is even awake! 😂
Thank you for your response.. yeah I hear my friends talk of cramps so I would always think this is what they experience, until recently I’ve started questioning why mine stop me from activities and my friend’s periods don’t seem to.

[freckledsloth]

I have it @Ayeshaxxx. I was diagnosed 10 years ago after surgery to remove an ovarian cyst. In the year before my diagnosis my previously heavy periods had turned into excruciatingly painful periods, so much so that there was one occasion where I nearly passed out from the pain while I was out in town. So yes absolutely go and see your GP.

The good news is that once you have been diagnosed it can be managed. I was lucky that as I was in surgery anyway at the time of diagnosis they could do something about it there and then but since then I've been relatively pain free and gave birth to DD last year.

[Ayeshaxxx]

@freckledsloth congratulations on DD! ☺️
Thank you for sharing your experience, what is the management options for it??
And do you know how they usually diagnose it? Ive read different things online and it’s confusing me, of course in your case like you say you were in surgery x

[AttilaTheMeerkat]

Please go and see your GP and whilst you are there insist on a referral to a gynaecologist. You would not be wasting their time, why would you think that anyway?

Periods like you describe are not normal at all and it’s something you should not have to put up with. To me anyway as someone formally diagnosed with endo, what you’re describing are classic symptoms of this. It can involve other organs like the bladder so there may be some deposits there too. Dark brown/almost black stringy bits of blood can also be a marker for endometriosis as well. It’s also the second most common gynae issue seen in women after fibroids.

It’s usually diagnosed through a keyhole surgery op called a laparoscopy as ultrasound scans and blood tests do not readily detect it.

Endometriosis UK is also a good website for information and knowledge here too is power.

[Ayeshaxxx]

@AttilaTheMeerkat that’s so helpful thank you! I wasn’t aware of the way in which they diagnose endo. I remember years ago as a teenager I got referred to hospital to have checks on my bladder etc as I was constantly having uti pain but no infection (esp. when on my period). At the time I had briefly heard of endometriosis and I remember mentioning it to the lady who did an ultrasound and she said 100% no because she would’ve seen it, and then after that I think I just kind of lost point in investigating further.
I’ll have a look on their website for some more info! Thank you!
I managed to get to sleep at 7 and I stupidly set through the alarm I set to call the gp so now I’m on hold, doubt I’ll get through today now, so annoyed at myself.

[Georgina125]

Another one to say that this isn't right. It can be difficult to get doctors to listen but be persistent. I was diagnosed about a year ago after being fobbed off for ages. As soon as you get a diagnosis, you can get help. In addition, you're mental health will improve massively. I was told for so long that I was a hypochondriac, then I had my MRI and they were horrified. Things which help me- hot water bottles, electric heat pads, proper pain killers and knowing it's not imagined.

[Yazoop]

It sounds like it could well be. The good thing about the laparoscopy (although it is such a major way to have to simply diagnose something) is that they will generally try to zap any endo they come across during the same procedure, if it is there, which may bring some immediate relief (that’s not guaranteed but a possibility - I did see a noticeable difference after I had it done)

[pintoffginplz]

I suffered for years with mine, the pain was so bad. It was so heavy that I was constantly anemic, I even lost my taste buds because of it. I had an endio lasering (can't remember the exact term) and it's actually stopped my periods. This is only good thou if your done having kids. Get to the gp to refer you to gyni, you shouldn't have to suffer like this.

[Yazoop]

But definitely have it checked out - any pain or discomfort that impacts your ability to have a normal life should not be tolerated. For years, people just thought of endo and other period related issues as simply “women’s problems” that should be tolerated - a systematic failure of our healthcare system and society, really. It is taken much more seriously now, as it should be - it can ruin people’s lives.

[NancysDream]

I am diagnosed with Endo. Mine feels like the earlier stages of labour. I seem to bleed from bladder and bowels too. The toilet bowl between red and black, I pass lots of clots. The pain keeps me up at night. I cannot work for one day every month. When I have come home from school, college, university and work because of period pains. Because they are like contractions, they stop me in my tracks. I also get nausea, edema, raised blood pressure etc.

When people say to me "it's just period pain" as some doctors and such did try, I used to accept it. Now I go, no. No it's not just period pain. Period pain doesn't impact your life like that. It's doesn't keep you awake at night and bring you to tears. I had to fight hard, not an easy or quick road to get an endo diagnosis but worth it.

[NancysDream]

You have to fight the misogynistic health system but it's worth it!

[AttilaTheMeerkat]

Hi Ayesha

I was only diagnosed with endo when I was in my early 30s; I had suffered similarly to you with painful periods and the like since onset of menses at 14.

Unfortunately that particular lady who scanned you misinformed you. I have had more internal ultrasound scans than I care to mention (as part of fertility treatment) and none of those ever detected the vast amount of endometriosis that was present within my uterine cavity (those deposits are that small). It can also go to other areas like the bowels, rectum. pouch of douglas and bladder.

You will indeed need to be persistent in order to get answers. Demand answers and do not be fobbed off.

[Ayeshaxxx]

@Georgina125 exactly! Of course it would be good to speak to someone to find out what’s going on but also it would massively help me mentally. When I’ve ever spoke about the pain before, I get the impression people think I’m being over dramatic. The thought of having this every month for the foreseeable is a nightmare but then the only cure I’ve found force myself on contraception and mask the issue. Which like I say isn’t good for me long term and I suffer with side effects from every method I’ve tried. On the plus side I’ve got a gp phone appointment later!!

@Yazoop that’s exactly how I feel! I don’t think it’s bearable every single month! And that’s really interesting about the procedure, I’m going to look into that and see what it involves! The fact that the procedure made yours easier to live with gives me hope!

[Ayeshaxxx]

@pintoffginplz thanks for your reply!! So was the laser intended to stop your period? That’s defo something I would want to look into further down the line depending on what’s actually wrong with me and future fertility etc. I also have been thinking about the blood loss possibly making me anaemic because it can’t be healthy to lose so much!

[Ayeshaxxx]

@NancysDream mentioning the toilet bowl is so helpful because it’s only recently I took a photo of it and showed my mum and she was really concerned and I told her it always looks like that on my period... I feel quite emotional this morning about it all.
ive also just been heaving like my body wants me to be sick but I’ve not had opportunity to eat or drink anything yet so there’s nothing in my system.
It sounds so hard but I’m so glad you got your diagnosis!!!

[AttilaTheMeerkat]

Let us know how you get on

Push for a referral to a gynaecologist!.

[Ayeshaxxx]

@AttilaTheMeerkat I’m so glad you’ve said that! At the time I was young so I just presumed she’s the expert and it was completely out the question. I guess maybe because it’s not widely known about she might not have known
Glad you got your diagnosis although how annoying you had to put up with the pain for so many years! X

[Ayeshaxxx]

UPDATE:
So I just came off the phone with the doctor who’s prescribed mefanamic acid for the pain and she’s referring me to a specialist with query endometriosis. I feel relieved that I’ve made the first step to potentially getting this sorted, I’m just very aware of the time this may take x

[NooneElseIsSingingMySong]

I’m so glad you’ve been heard and you’re getting the referral. I have endo. I wasn’t diagnosed til my mid 30s, despite having problem periods from the age of 14. I found Mefanic acid helped but I had to stop taking it (I’m asthmatic and it made me wheezy). I was on the pill for long time which helped too. I suddenly developed severe abdo pain - admitted ?appendicitis but my appendix is fine. It turned into chronic pain, all tests were normal so I pushed for a gynae referral who agreed to do the laparoscopy. I only had small amounts of endometriosis but once they had lasered them my pain went. My periods have been easier since. I really hope you get the diagnosis and support you need. It’s not normal to suffer this much.