Endo Sisters United

Endo Sisters United

Hi to all. I'm suzanne. Soon to be 40. Been suffering years with periods and period pains even when I'm not on my period. Lots of other symptoms too. Diagnosed with chronic endometriosis in Feb 2016. Yet to be referred to a specialist endo centre. On hormone injections for now but no relief. Pain more often than not. I'm a single mum of 3 children which I am grateful. I would love to chat to others.

11 Replies

Hi Suzanne, i was diagnosed with stage 4 Endo in June i have my follow up appt on Monday....I am really struggling to function on a basic level with pain, and fatigue.I am sure all of which you are familiar with! Hats off to you for managing 3 children on your own. I have my 3 year old son who is a very busy boy and struggle! How do you do it?! Are you pressing for a BSGE referral? X

Hi brizzlebird, I wrote to my gp as it seems nobody is listening to me. He wants to see me. I will make an appointment and see where I go from there. I find it a struggle with the kids. But they help me now and again. Even had to get my 7 year old to help me dress because the pain was so bad I couldn't bend. I just want it to be over. How's your symptoms x

Oh God I totally understand. My symptoms are severe left sided hip pain, back and sciatic pain. I have pain everyday. Ovulating is as bad as my period now. I can barely string a sentence together. The fatigue is overwhelming too. Message me anytime. I too like many on here feel very alone with it all, but we have each other. Do you know what stage Endo you have? X

My endo is stage 3/4. Thanks for getting back to me. I don't think GP's fully understand. I wrote to my gp with the help of lindle on here. Doctor wants to see me. Just want someone to take me seriously and do something x

Hey, I'd be happy to chat to you for whatever you need. It can be a scary time but you need to pester and chase for a laparoscopy and treatment. I was a right pain to my consultant! I was diagnosed earlier this year too and treated via a lap and put on the pill to manage it. It's a daily battle but it's possible but can be a lonely experience without talking to people who know what it's like. Xx

Thank you Anna, I just feel alone. I know their are lots of us out there. I am single and can't think of starting a relationship whilst all this is happening. It's so frustrating. What treatment did you have ? X

I had a laparoscopy to remove as much as possible and was put on the pill to manage it. I think it's crept back a bit in the last few weeks because my back is agony so I'm monitoring it but some days are miserable. Especially when you have to put a brave face on it for work. I'm so sorry you're suffering, send me a private message anytime if you want to have a proper chat, we could all do with help getting through this. Xx

Hi Suzy,

It sounds as if you're coping so well under the circumstances. Kudos to you.

I'm lucky enough to have 2 beautiful children, and most of the time I can keep up with them, but on bad days its hard.

After struggling with my periods since they started I am still yet to be diagnosed and taken seriously. Even through I know that I have Endo.

My GP said that none of my symptoms relate to endo. Awful stomach pain, very heavy periods, bad pelvic area, bad back and legs, IBS symptoms, bladder issues, and fatigue. Also the fact that my mum and both grandmothers had it means nothing as according to her It isn't hereditary.

She said that some women just have bad periods and maybe I'm a 'bit hormonal'. She suggested the mirena coil. I've heard mixed reports so doing some research at the mo. I can't understand how the problem can be attempted to be solved if it's not formally diagnosed.

This seems a good network for support :)

You need to push for a lap hun. That's the only way they can diagnose properly. Also sounds like you need to change gp. To say you have a female gp who doesn't understand, it's just so wrong. Have you spoken to lindle on here? X

Hello Suzanne 🙋

I'm sorry to hear that you are in so much pain daily, but it is good that you are being referred to a endo specialist centre to help you.

I am Felicia (Flick), I'm 24 and have been suffering since I started my periods at age 14. I got diagnosed in October 2014 and have already had 2 ops, awaiting another in a month or so ❤️

Hi Suzanne. Do you live in any of the areas that have an Endo support group?


I've just joined the central London Facebook group. Will be good to chat to fellow sufferers on there and they have meet ups which I hope to attend if my symptoms make it possible. The forum here is great. It's such an isolating illness and difficult for people to understand so it really helps to have others to talk to who do understand. I'm 41, diagnosed at 18, had to leave work a year ago due to Endo and another illness, I'm single, live alone and my parents have passed so it can be really tough despite my wonderful friends helping when they can. Feel free to message me if you ever want to chat 😊 Xx

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