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Women's health

Does anyone have endometriosis? I'm scared

8 replies

reresres · 12/12/2018 13:19

I think I have this.
Over the years I've never been takin seriously
Really bad gas
Feeling sick
Blood in urine and pressure
Blood in stool on period
Exhausted most of the time
Irregular periods
Hot flushes
Anxiety /depression
Anyone here have this?

OP posts:
violetgrey · 14/12/2018 15:45

I have endometriosis and it took a long time to get it diagnosed. Please go and see your doctor and keep pushing for tests to get to the bottom of it. Wish you luck!

FrankieChips · 21/12/2018 12:22

I have suspected endometriosis. Getting a laparoscopy in January to confirm. My GP was actually really good about it and referred me for scans and then gynacologist almost straight away. Not sure if it's because of my age (41).

Really struggling with the pain at the moment. Can't wait for the op. I also have large cysts in both ovaries. It really sucks.

My symptoms aren't all like yours though. I sometimes have pain before my period but usually the pain is only during the week of the period. Periods are regular and very heavy (have to use the night time pads all the time). During my period the pain is severe on my right side and radiates down my thigh and it can be difficult to walk. I have bowel problems and need to pee all the time (they think the scaring is scattered around my bowel). I feel very tired all the time too.

The pain is very intense during my period and I sometimes wake up in the middle of the night having to take more pain killers. It's pretty bad at the moment :(

Hope you get it sorted soon! Keep at them x

NancyFrank · 21/12/2018 14:25

I have endometriosis, I went to my GP aged 19 and said I think I have endometriosis and listed my symptoms. I was lucky she listened and agreed and I was diagnosed by lap a while later. The only way to diagnose is with a laparascopic surgery as it can't be seen on scans. Definitely go to GP and be firm x

Liande · 23/12/2018 22:14

As above the only way to confirm Endo is with laparoscopic surgery. I had symptoms from my early teens and saw numerous doctors before I was finally diagnosed privately at 19. Ask your GP for a specialist referral. Goodluck.

Redcrayons · 23/12/2018 22:29

I had some but not all of your symptoms. Mid cycle pain was as bad as period pain for me. Though I've never had particularly heavy periods. It took me a while to get diagnosed, I was only referred because I had private medical insurance.
the worst of my symptoms never came back after pregnancy luckily.

How old are you? I also have palpitations/hot flushes and anxiety but I think this is more peri-menopause symptoms than endo.

ElyElyOy · 26/12/2018 22:54

Definitely go to your Dr and take details of your symptoms: maybe even ask for a double appointment so you have a bit longer to go through everything.

Endo UK have some really good sheets you can use for recording and reporting your symptoms. I had 15 years of GP visits before they finally referred me for a lap and was diagnosed with severe endo (and I had been saying it was endometriosis all that time, but they never took me seriously).

Maybe also take some time to study the NICE guidelines for endometriosis so that you know what the GP should be offering.

Good luck x

BillywigSting · 26/12/2018 23:03

I have suspected endo.

Very heavy painful and long periods, very loose/spasmy bowels when on (sorry for tmi but I get a nasty spasmy cramp that feels like a contraction, and then I will have to run to the loo), pain radiating to knees, back and up to belly button.

Also get pain during sex sometimes and occasionally mid cycle.

Symptoms eased off for a year or so after dc but got progressively worse to the point where it was beginning to be somewhat life limiting (bed ridden and puking and bleeding like a stuck pig for ten /twelve days a month is not normal!).

I'm on the depo injection now so don't get periods as often or for as long, and they are manageable with over the counter painkillers.

I've declined a lap as that seems to be keeping it under control for now. If it gets worse I will go for one and discuss options then.

Go and see your doctor though, push for what you need because it's no way to live

Minniemee · 26/12/2018 23:56

I have endometriosis (diagnosed at 18) and have all of those symptoms you have listed.

I would keep a diary of exactly when you experience each symptom and take this to the doctors. Unfortunately, you will need to be extremely firm with your GP about referring to the hospital as they very often try and put you on the pill/medicate in an attempt to fob you off. But you know your own body.

When you do get the referral, take some time to search on the internet for any hospitals or drs in your area that specialise in gynae/endometriosis as with most nhs trusts you can now choose a hospital for your treatment. It really does make a difference. I was admitted with severe stomach pains to A&E in my home town- they thought appendicitis so took it out- during the op noticed that it was not that but actually my bowel was attached to my stomach wall with an adhesion (from the endo). They took it off but then sent me on my merry way with no connection to it being endo. Just happened that I was moving to uni that summer so I was transferred for an outpatient hospital there (Leicester royal) and it specialised in endometriosis research. The consultant noticed the connection to endometriosis straight away and I had my Lapo op within a month and 6 month prostap injections. Changed my life.

Good luck and lots of love. X


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