Endometriosis

[Laursjayne123]

Hey girls

I wanted to share to you how I am feeling. From the age of 14 I have suffered so badly with my periods cramps
Always one week before I'm due to come on I literally cannot move I have no energy no motivation and I'm that tired .
I had my first child in November last year and all of my symptoms have gotten worse I struggle to pee I feel the urge to go but no a lot comes out I have lower back pain and lower side pain .
I've been to the doctors telling them my symptoms and they always fob me off and I'm coming to the point now where I actually don't no what to do
I've been searching my symptoms on google I know I shouldn't but every time I look I have all the symptoms. My Nan and auntie suffered with endometriosis they gave both had a hysterectomy
Is there anyone on here that has been Diagnosed or anyone that could help me please xxx

[AttilaTheMeerkat]

I have endometriosis (was diagnosed with this at 31) and have had similar problems to what you describe from the age of 14 too. It was all due to endometriosis and it simply was not recognised by anyone.

If your GP to date has been unhelpful I would reregister with another GP practice. Keep on at them, do not allow yourself to be fobbed off and be persistent with them. If you do not already do so I would also keep a daily pain and symptom diary noting everything.

I would also urge you to read this website and make contact with them too:-
www.endometriosis-uk.org/

[Bellag79]

I have just been diagnosed at the age of 40. It has spread to my bowel as well. I am now on the urgent surgery list for an open total hysterectomy. I am gutted as I was desperate for another child, instead I am going to end up going straight in to the menopause after surgery and may end up with a colostomy bag! Its just awful so I really feel for you.

[MagratsDanglyCharms]

There are some specialist groups online that advocate / campaign / discuss and advise on this issue. There is one in Wales that is a charity called Fair Treatment for the Women of Wales (FTWW) (deals with other issues too but largely endo related. ) If you add yourself to the group you will find that there are several active members who have a HUGE wealth of knowledge in terms of the condition itself and also how to access the best possible treatments. Hope that helps!

[LairTai]

Hello all,
I actually came on here to post about endo but saw this post.
Firstly it takes on average a woman over 7 years to be diagnosed with endometriosis. We are taught as women oh it's just your period AND it's notoriously difficult to diagnose.
I have stage 4 endometriosis which is now in my bowel and the deeply infiltrated type.
I too,like another poster need surgery. I'm 37.
Please push your GP as much as you can and ask for a referral to a gynaecologist. Push and push and push some more.
It took me to be rushed to hospital and admitted for a week to get the help I need
It's a serious condition which can be extremely debilitating physically and mentally.
I've joined endometriosis UK and it's a great website and they organise webinars which have been excellent.

Good luck.
If you have any questions endometriosis UK have a fantastic forum

[Bellag79]

@LairTai, thank you for the info. Mine is stage 4 too and I am just so angry about it. I have been to the gp so many times. I now have a 9.2 cm endo cyst on one ovary and a 4cm cyst on the other. Like you my bowel is stuck to the outside of my womb. Its just horrendous the pain we have to go through before we are taken seriously. I hope surgery goes well for you too.

[LairTai]

Hi Bellag79 so sorry to hear this 😥
I'm currently very debilitated from my endo. I don't know if you've been told but apparently endo mimics other illnesses, another reason why it's hard to detect.
I am experiencing a lot of inflammatory bowel problems like Crohn's because of the bleeding into my bowel.
I get fevers and chills and sickness. I'm exhausted by it and the pain!
I have 3 appointments at the hospital between sept and Oct so fingers crossed.
I also get lots of joint pain.
Has anyone tried the elimination diet?
I'm currently on it and I have to say it's really really helped.
The other issue is fertility.

[ScammedOrWhat]

Don't let your GP fob you off - tell them you suspect Endometriosis, and you'd like to be referred to a gynaecologist. Don't take no for an answer.

I am one of the statistics - took me 7 years to get diagnosed, lots of getting fobbed off by my (female) GP. Ended up in A&E with a ruptured cyst, emergency surgery. They diagnosed Stage 4 endo with loads of adheshions and a bowel stricture.

I had a second surgery, which has massively helped my symptoms. But I'm infertile. It broke my heart.

So - do not let your GP fob you off. Mine cost me my fertility and many years of pain.

But on the positive side - the surgery has really helped ease my symptoms so there is light at the end of the tunnel.

[LairTai]

Yes agree with ScammedOrWhat push and dont stop until you get seen properly.
It took me also to be rushed in to hospital and admitted for a week to be taken seriously.
Perhaps if they'd taken me seriously years before it wouldn't be stuck in my bowel etc and I would be wouldn't be so unwell.

The fertility for me has/is breaking me
I don't have anyone to really turn to. I need some counseling but if you Google it it's always counselling for IVF or trying to conceive therapy.

[Dontknownow86]

You need to get aggressive. Do you have someone you can take with you too advocate for you?