Hi everyone my first post hopefully get some answers :) x

[Terrix]

I have had symptoms of endometriosis since I was 18, I’m now 27 and just got diagnosed after a ultrasound & laparoscopy in November. Had nothing but issues with the doctor not getting any information still now in March. I got put on prostap in December but they forgot to mention it was 4weekly they said 12. So end of January the pain was horrific bleeding all came back worse than ever. Anyway now I’m back on the prostap and 4weekly as prescribed. Waiting for MRI results to come back but I have already been told i need further surgery. They said they wouldn’t call it a stage as it just worries people. But I have a feeling it’s bad I just would love to hear anyone’s stories as it’s such a scary time going through this alone until I’ve found this website. The unknown is killing me I just hope one day I can have children of my own x

[nikkimatt2019]

I've been suffering with pains for many years this was going on when I was around 18/19 years old. I kept going to gp because I was in so much pain and bleeding and massive clots it took so long for them to diagnose me, back in 2018 I was told I had cancer at time before I had my partner and friend and adoptive nana I shut of and thought this cluldnt be real then I finally went back and then I was told and diagnosed with 6 massive polyps size as golf balls if it was back in 2019 with my partner saving my life I would been dead and had cancer spread through my body and that was what a gp told me and my partner anyway had operation to have them removed when I was discharged from hospital they said I was ment to have a check up after 2 weeks they never even done that. Anyway I was ok for a while then I had pains again and this time stronger went for more scans was told I had polyps again. Then went for more scans was told all of sudden they came out. At these times I was still suffering server pains and bleeding, had more scans again they said I had polyps back nothing was done I was left and just constantly giving tablets. And so goes on with scans after scans. Then all of a sudden I was having more stronger pains I didnt know what the hell was going on so they reffered me to mri scan 2022 was told I have 2 double thick lining of endometriosis and was ment to go for next stage including an operation and nothing has been done I've been chasing up and nothing no response. So today I've rang gp chasing up now I have to ring doctors tomarrow to book telephone call for thos to be chased up for my next stage. I've looked up on nhs sights and it's a possibility if it dosent get treated theres possibility I could end up with cancer also as it's a high risk I have. No body has heard of this my polish friend she had endometriosis but wasnt the one I have we are all scared and confused. My moods are sky high it makes you feel like crap specially with the bleeding and suffering with the pain constantly I think personally they should do more research and make this more awareness of this as alot of us is suffering and alot of us is ending up with more damage while we are left till it's to late. I'm sorry but if alot of us women has this taken serious and hospitals done there job properly and gave us the treatment this could of avoided alot of damage and stopped this going further. Mine I still on investigation, I'm still waiting for operation and more information. More scans as it has got worst, it feels like it all has spread I've always been unlucky never ever had good experience with hospitals or gp's and I'm on high level risk of getting cancer

[nikkimatt2019]

Hope you get yours sorted keep us updated and I'm so sorry you are going through this. I cant have children, I've had a miscarriage before due to this and because I cant have or carry children

[Jonesy84]

Hi lovely, sorry to hear it took so long for you to get the diagnosis and laparoscopy but unfortunately this seems common. I have basically suffered since the day I started my period. Pain, heavy bleeding etc etc. I too was diagnosed through laporoscopy. I just wanted to give you hope that women who have endo do go on to have children naturally. I become a mummy 5 months ago so please keep the faith. For now try and concentrate on getting yourself 100% xx

[nikkimatt2019 in reply to Jonesy84]

Some of u women are very very lucky women. Glad u got to have children. I'm just 1 unlucky people me and my body is damaged goods

[Narcica]

Hi Terrix, I’ve been suffering from endometriosis since 17 (37 now), in the past 5 years stage 4 and have a couple of underlying conditions. I had my first surgery when I was 17, had a couple of other surgeries, hormone treatments etc. Sadly this illness is still not being taken seriously enough today I am writing my experiences and clinical nutrition advices on my Instagram and hope it helps others. If you are interested: plate_coach

I am on Decapeptyl 12 weekly plus having Mirena coil inserted and using estrogen gel. All the best x

[YummyBear]

Don't give up, be positive always! Examine your lifestyle, diet, etc. and change if necessary. I had undiagnosed endometriosis many moons ago (awful time, chronic pain, clotting, misery), due to it lack of medical advancements in the 1960/70s, no laparoscopic procedures in those days. In 1971, I saw a private consultant who suspected Endo. I had a general anaesthetic (10 days in hospital) and did not know what I'd had done until the day after the operation: I had an ovary+fallopian tube removed due to Endo and cystic issues. Fast forward to mid 70/80s. I continued with Endo but was lucky enough to have 3 miracle babies, plus sadly one miscarriage. Endo continued until early menopause. This site will help you on your journey.

[Dee_EndoUK Moderator Endometriosis UK]

Hi Terrix

First of all, a really warm welcome to the forum. It's lovely that some of our members have reached out to you already with support. You're definitely not alone - everyone here has experience of endometriosis and understands what you're going through.

Aside from the forum, we also have face-to-face support groups all over the UK, where you can chat about endometriosis and the issues you are experiencing with other sufferers. To find out if there's one in your area, just visit endometriosis-uk.org/find-a....

If there's not one in your area we also have an online support group.

Take care - wishing you all the best x

[catsrule40]

HiYou are certainly not alone and this forum has really helped me. I sufffered for the last 5 years after coming off the pill and trying for a baby. Unfortunately I left it too late and having children wasn't going to be on the cards for me (Im 42). I had stage 4 endo making a mess of things and a large chocolate cyst on one of my ovaries and mine seemed to get worse very quickly. It affects everyone in such different ways and everyone experiences are different. My advise to you would be to push to be seen and treated as soon as you can and see a gynae who specialises in Endo. If you can afford it, get a private appointment to speed things along a bit. It is worth every penny trust me as the waiting and worrying is the worst part I think.

Let me know if you have any questions - happy to help

Good luck xx