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Women's health

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Do you know anything about endometriosis?

44 replies

Ayeshaxxx · 27/11/2020 04:40

(Originally posted one Health as I didn’t initially see Women’s Health, but feel this may be more relevant)

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

OP posts:
Ayeshaxxx · 27/11/2020 20:46

@Possiblynotever @Aquarius111 thank you so much for the support, really helps:) my friends and family have tried to be supportive but they understandably have no idea what endometriosis is. I’ll defo push through with this because I really want something done! After your gp has put you through for initial referral do you know roughly how long it takes to hear anything back about appointment?? Just so I know what’s average waiting time because she didn’t tell me.

OP posts:
Aquarius111 · 27/11/2020 21:32

Aww no problem I know how you feel as I've had issues before with the GP not taking me seriously I ended up going private and paying. But on the NHS if they think it's serious they will give you a 2 week emergency referral, but please make out how bad it is otherwise they won't bother and will make you wait longer. You have to make out it's ruining your life x

Ayeshaxxx · 27/11/2020 21:38

@Graphista You sound like you’ve been through a lot with it that must have been so difficult!
Glad you’ve managed to find a treatment that works for you!
That’s so bad about the nurse thinking you should have to put up with it. Some people just don’t understand, I think some women who have never struggled can’t comprehend that someone’s else’s period can be dramatically more painful than their own. My sister was one of these people, she used to hear me complain about my period all the time and recently admitted she never took me that seriously until after she had DD and now she sometimes suffers with her periods and is more understanding to what I’ve gone through for years.

And yes it’s only recently I’ve learnt that the withdrawal bleed wasn’t necessary when I was speaking to a doctor about the combined pill

Xxxx

OP posts:
Ayeshaxxx · 27/11/2020 21:39

@Aquarius111 Okay so do you think I should ring up again tomorrow or the next day?? I definitely want this taken seriously xx

OP posts:
mineofuselessinformation · 27/11/2020 21:45

IME, my and dc2's endo pain starts at the back in the waist, then radiates down the front of the legs to the knees.
The pulsating pain you describe sounds very familiar. I used to get it in my right kidney - so badly I used to wish I would faint to give me a break.
I don't know if the at echoes with you?

Ayeshaxxx · 27/11/2020 21:55

@mineofuselessinformation mine isn’t so much in my back but I can definitely relate with knees and legs. My thighs and legs have had a dull ache all day! I forced myself to sleep earlier because of the stomach pain, it is like a constant pulsating feeling, I can’t think of one point today that my pain has subsided, even for a few minutes, it’s constant 😭
Have you received treatment??

OP posts:
mineofuselessinformation · 27/11/2020 22:02

Sorry, I ended up having a hysterectomy for that and other reasons! When I was diagnosed, it was the early days of laser treatment, but I didn't get offered it. I was offered hormones to shut down the cycle (PMT x 100......)
Dc is on progesterone only pill to stop bleeds and prevent pain while waiting to decide whether or not to proceed with more tests.

mineofuselessinformation · 27/11/2020 22:04

And, you definitely need to be investigated to find the source of the pain.
Good luck.

Graphista · 27/11/2020 22:04

Erm...I'm catholic raised and Scots ENGLAND might be mostly non catholic but not the case in Scotland or Northern Ireland, I don't know wales well enough on that score to comment. But my point relates back to the historic development of the pill, which was mainly a USA development but the Catholic Church had then as now a lot of influence globally

I agree I also want to know what the hell is going on with prescribing guidelines.

I am on strong painkillers for a physical disability, been on them years and only take them if I'm in absolute agony so a "month" actually lasts me 3 or 4 - which I'd have thought easy enough to see on my records! But again if I get anyone but my main usual gp (who actually isn't "my" gp as her list was full when I joined the surgery - that's a whole other thread!) I get 20 bloody questions interrogated!

Now, I do understand it's partly as it's "popular" for "recreational use" (personally I don't understand the appeal makes me feel dreadful! Dizzy, nauseous etc) but it's now very much at the stage where all prescribed meds are incredibly hard to get and this is meaning patients are suffering unnecessarily.

It needs sorted!

I'm also in the unfortunate position of being allergic to or intolerant of many meds. I can't take nsaids (set off my asthma and upset my stomach to point they're not in there long enough to do anything!), penicillin i'm allergic to and even some non penicillin antibiotics make me very ill, all recorded on my file inc emergency admissions from before I knew I'd become allergic/had bad reactions yet even when I've requested particular antibiotics (as I know which ones I'm ok with) I've been treated with suspicion! As if there's anything to be gained from alternative antibiotics! And I'm not meaning I'm asking for antibiotics when they're not warranted but when they've gone to prescribe me one I can't take. I was very lucky on one occasion when the name of one changed and it was the pharmacist picked up it was one I was seriously allergic to!

Sorry went on a bit there but it does annoy me.

merlotormalbec · 27/11/2020 22:05

Im undergoing tests for this atm. The only thing to ease the pain is a hot water bottle so that will be easier than a bath! I take everywhere with me, literally everywhere I go it's the only thing to help. Hope you get an answer soon x

merlotormalbec · 27/11/2020 22:07

I get regular and light periods but the pain is unbearable to the point where I can't walk at all

Graphista · 27/11/2020 23:51

Sometimes a cold hot water bottle - fill it with cold rather than warm water - can help

Aquarius111 · 28/11/2020 00:59

I definitely think you need to keep trying till they take you seriously because you don't know what it is but it's causing you a lot of pain every day which no one should have to go through. My friend only got taken seriously when she turnt up to A&E with her husband crying her eyes out because of how bad her pains were. Hopefully yours don't get that bad before it gets sorted Sadx

CorianderQueen · 28/11/2020 01:01

A school friend had endo. Her lung collapsed because of it.

Ayeshaxxx · 28/11/2020 05:59

Was having a bad night with the pain, took pain relief and was awake until 3am, 2 hours into sleep I just woke up by the feeling of blood leaking down my legs, felt like I was a child having an accident, it’s all over the bed so now I’m going in the spare room and dealing with it when I’ve slept properly, fed up!

Just reading your responses now! Never even thought of a cold water bottle @Graphista Thats an idea I’ll try that now. And completely agree with what you’ve said regarding medication, I understand they need to be cautious but when you’re symptoms warrant a drug being administered , I don’t see why they often hold back because it does mean people suffer, like you said!
@merlotormalbec hey, what’s the tests you’ve been undergoing?? How’s it going with it all? How are you finding the process?

@CorianderQueen her lung collapsed?? Omg that sounds awful I didn’t even know that could be related?

OP posts:
merlotormalbec · 28/11/2020 12:43

They've given me the pill to see if that helps. I've also had an internal scan and yesterday I was referred to see a gynaecologist for a laparoscopy.

Possiblynotever · 28/11/2020 16:30

Endometriosis is a horrid illness and difficult to cure. It is due to pieces of your endometrium that get out of their normal place and start bleeding it monthly wherever they are, creating big clots of blood that do not go away.
Mine is a simplistic explanation as I am no professional.
But it is crippling and it was devastating on my job performance.
@Graphista I feel for you, I too have developed the most serious intolerances and allergies due to the amount of medicines I have had to swallow....but pain is not an option, not that type of pain.
It seems really difficult to find a health operator who is inclined to stop unnecessary pain for women...

Graphista · 29/11/2020 05:41

her lung collapsed?? Omg that sounds awful I didn’t even know that could be related?

Yep! Endo is where endometrial tissue grows in places it shouldn’t - can be anywhere in the body. I have endo on my spine, stomach and bowel. I still have on my medical records I believe a misdiagnosis of ibs which happened before the endo dx.

There have been patients who’ve had bleeding from their noses, ears, mouths and even eyes when having their period because they have endo tissue in those places.

Regarding mess/flooding in bed try wearing Tena pants as well as pads, I’ve also been known to wear dark coloured tights or leggings for this purpose. Also get a good water resistant mattress protector, replacing a mattress is an expensive pita! You could also try those disposable pads used for night training babies/toddlers much easier to change them than a whole bed. Towels aren’t very effective.

@possiblynotever I’ve written extensively on mn and elsewhere inc to my Mp on medical misogyny. Though it’s not a purely Uk issue it’s global. I forget the stats (I really should make a note) but generally speaking...

Women (and by extension children as it tends to be mothers take them to drs/a&e) are:

More likely to be fobbed off/dismissed altogether

More likely to be misdiagnosed

More likely to have symptoms especially pain minimised

More likely to have difficulty getting a referral to a specialist (ie men are more easily able to get referrals)

More likely to have their emotions/behaviour written on their medical records (eg “hysterical” “neurotic” “extremely distressed”)

More likely to be seen as “awkward” patients if they push for referral or treatment

More likely to be de-registered by gp surgeries (usually for the above) and face difficulties getting registered with another surgery (“black balling” of patients - this is strenuously denied but it does happen)

I started a thread some time ago and the stories from posters were shocking even to me. It’s not just gynae issues either.

There appear to be particular issues with heart disease, gall bladder disease, thyroid disease and pain conditions.

The problem lies, at least partly, I believe in the fact that medics are STILL trained on the basis that the “default” model for the human body is the Male body and key textbooks are still written on that premise.

Our bodies differ not only in terms of the sexual and reproductive systems but also blood composition, musculoskeletally, hormones other than sex hormones, organ size and position etc

Pain wise, culturally in western culture certainly women are expected to have higher levels of pain tolerance but be more likely to complain about pain - there is no real research basis for this. Labour is often cited as the basis as nerve responses during labour apparently exceed almost any pain men experience, but the methodology for testing such things is flawed and subjective.

Sorry - one of my soap boxes medical misogyny

anna114young · 07/12/2020 15:16

@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 x

@anna114young How did you find the experience of going private? How much roughly was it or do you have health care plan with work (if you don’t mind me asking). Just asking as doctor has warned me this is by no means a quick process x

Hi! The experience of going private was great, I booked the consultation - had a scan at the consultation and was told that I would be a candidate for surgery and asked when I wanted it! I could have had it any time I wanted! Really practical.

Bad side is that is was around £5,000 - I had some financial help with this from family as my pain was really disabling. I know not everyone is that fortunate so I am very lucky.

Some health care plans (bupa for example) I think might cover it but I don't know a lot about this.

Good luck!!

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