Do you know anything about endometriosis?

[Ayeshaxxx]

(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

I'm so sorry to hear you are going through something like this, it sounds like it could be a lot of things. Have you thought about going to the doctors to have blood tests etc?
If the doctor thinks it could be endo then they might book you in for a scan

I have had endometriosis and I had to undergo surgery ( laparoscopy) twice.
The symptoms you describe are very similar to the ones I had - together with clotting whe bleeding. I felt that taking cranberry pills regularly helped with the urinary tract as well as a healthy diet without refined sugars.
Yes, you need a good specialist to diagnose it and, even if you do not have endometriosis, I would add some counselling/ therapy. What you are going through is hard both on the body and on the mind.
In my case it was an ordeal but I have one child and I feel blessed every day. There is good hope.

@Aquarius111 Hey thanks for your response, yeah I think I’m going to have to go over the possibilities with my doctor. Something else just came to mind, I found notes from an ultrasound I had when I was pregnant and it states “right ovary appears polycystic”. Surely someone should’ve spoke to me about that or is that not a big deal? But then again I don’t know much about PCOS either

@Possiblynotever I have some cranberry pills I’ll take them now! That’s so helpful. Thank you for your response, how long would you say it took you from first going to the doctors about your symptoms to treatment??
How did you also find the surgery?

I was going to say it might be PCO, are you on any form of contraception? A couple of my friends suffer from this and had the exact same symptoms as you.
One of them had an operation to remove a cyst as hers had grown, This didn't affect her fertility as she went on to have a baby a year later. Also some women have cysts and don't have to have an operation or anything as sometimes they go away by themselves which is probably why they didn't mention it to you. Hope that makes you feel better but make sure you definitely get it checked out x

@Aquarius111
I’ve been on the mini pill, but recently came off and AF returned as awful as I remember it to be. Ohh that’s interesting so the symptoms are similar? The only thing I can’t relate to PCOS wise is the lack of regular periods as mine are every 32 days without fail, were irregular periods a symptom all your friends had? X

Their symptoms were very similar to yours, extremely painful periods and heavy to. The one who had an operation went to A&E 5 times before they took her seriously and that's how she got diagnosed. And yes the pill does mask underlying problems until you come off it again, that's why I really do think you have PCO (but I'm not a doctor just reading from your symptoms). I'm not sure about the irregular periods as they were ALL on the pill to help their symptoms but they all had heavy periods x

Also I forgot to add you can still have regular periods and be diagnosed with PCO x

@Aquarius111 That’s honestly so helpful thank you! Now I can look into PCO as a potential and speak with my doctor today (providing I get an appointment that is). I just have a gut feeling something isn’t right, I'm making notes on my symptoms now so I can keep some kind of diary in case I do manage to get referred to specialists xx

@Aquarius111 just looking into the symptoms now and you might be on to something here! Seen one of the top symptoms is oily skin/acne, I’m currently 7 months into acne treatment from gp, and if this doesn’t work then I get referred to dermatologist. Also one of the many reasons I came off the mini pill is because I have oily skin and mini pill is known to increase oil production, making my skin worse, so this is all making sense x

I have endo and your symptoms would fit, but they'd also fit with pcos and possibly other pathologies

I'm actually wondering why you weren't referred to Gynae for thorough investigations following 3rd mc?

I know in Uk 3 consecutive mc are the point at which you can ask for investigations as to potential cause.

I had 2 mc before having dd, couldn't have any more after dd due to a separate medical condition

Be prepared to be fobbed off! So you need to be pro active and assertive

Took me 14 years until I was dx.

Good luck with it all

Call 111 tomorrow morning and tell them how much blood you are losing. They will book you an emergency appointment with your nearest GP that day. Explain all your symptoms (the pain waking you up at night etc). Hopefully your GP will make you a referral there and then but you need to be very stern with them that this is a problem that's causing you real issues.
Hope everything works out for you x

@Graphista Hey, thanks for responding!
I was referred to Tommy’s Miscarriage Clinic and they did a few blood tests I really can’t even remember what they were looking for. At the time I guess I was so caught up in everything that I’d experienced I didn’t even think to mention my bad periods as something related to losses.
Sorry to hear of your losses, it’s tough isn’t it.
14 years! I did think this would be an issue, it seems like period troubles are just dismissed from what I’ve read which is such a shame x

@Aquarius111
Yes you’re completely right, this isn’t something i can comfortably live with, my body is going to be so exhausted due to pain and then that causing me lack of sleep, so I will make it clear tomorrow I need a referral.
Thank you so much for your help!

I really hope you get it sorted what ever it may be, good luck and keep us updated

From a summary of all the above:

• you have something that needs to be' assessed by a doctor
• you need to take charge and fight your way through to get a. Attention and b. Treatment
• be assertive. If they do not listen, be a pain.

Do not soldier on.

@Possiblynotever
Yes you’re right! I’m annoyed with myself now really for not saying anything years ago and pushing with it, but as my friends mentioned cramps I just thought it was all normal.
Having a gp call me this afternoon so I’ll update!! X

Just keep us posted and be very proactive with doctors.
Note that most period pains/cramps disappear or decrease if you treat them at a very early stage with aspirin. This,I was told, is because they inhibit prostaglandins. Note that if you take aspirin your period will increase significantly . Also, you should not give aspirin to young girls ( not even in teens).

@Possiblynotever still waiting on my phone call, I’m worrying that when I speak to them they might dismiss it I’m trying to think of ways to describe the pain and gets my point across that I need a referral. Thank you for that advice also!!

I have endometriosis and my number one tip is to keep going to the doctor, then another doctor, then another until you get an appropriate referral. If at the referral you don't get any investigation/appropriate treatment then you need to ask for a second opinion.

What I have said might not be popular with everyone on here but too many women are going undiagnosed/misdiagnosed for too long. I suffered with horrendous pain for nearly 15 years and was always told "take paracetamol" before finally a doctor sent me for a scan. They found endometriosis and in January I had surgery (privately as I did not want to wait a moment longer) best thing I have ever done. Pain free and got my life back.

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

Well done you! This is a first step to your pain free life! Even if it is la ong process it starts with a first step and you are doing it....!
Now push the doctor to write that you have had 4 ( FOUR!) miscarriages and that you need an urgent investigation....

So happy you got a referred to a specialist! But @anna114young is right, you need to be very persistent with it otherwise they will fob you off

That's great you got a referral so quickly!

Endo doesn't always show on ultrasound as it did fortunately for a pp, more usually a laparoscopy is needed. I'd had a number of scans before dx (not looking for endo specifically but investigating symptoms and due to mc and ovarian torsion) the endo was finally discovered during surgery for 2nd mc which was also partly ectopic (twins, rare presentation - one in womb one in tube) ended up having 3 surgeries in a fortnight with that then a further 2 later surgeries for the endo and then other treatments over the years.

The most effective was prostap which effectively is a temporary fake menopause but unfortunately I developed a reaction to the medication and couldn't take it again.

I'm now on noriday continuously so don't have periods at all thanks to an understanding gp. But when she's been away when prescription needed I've had to fight to get it! Although she's now put a note on my file that I'm to be prescribed it in her absence. Main difficulty was a practice nurse who seems to think it's a moral failing/weakness of character to not want horrendous periods!

They aren't a necessity. Only reason withdrawal bleeds were built into the pill was a combination of pressure from the Catholic Church and "reassurance" to women that they weren't pregnant supposedly (not sure I believe the latter)

Good luck with it all you seem a pro active type which is really good

@Graphista there is something wierd about the prescription of medicines right now....I am currently in major pain due to muscle contractions in one of my buttocks and the gp refuses to give me anything but ipobrufen.
In the Continent I get easily a muscle relaxant and strong painkillers with the recommendation of rest.
Here is ipobrufen, get on moving please and go to a physio session ( in a month).
The UK is mostly non catholic, I truly do not understand the attitude towards pain....