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Endometriosis UK
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Newbie wanting advice

Hi guys, I am new to this site and I would like some advice if possible.

I am a 22 year old girl and for the last 12 months I have suffered with really bad pains in my lower left abdomen, pain during and after intercourse, bleeding during intercourse, a small lump in my lower left abdomen and tiredness. I have been to my doctors so many times, I’ve had a biopsy and a few scans, all the scans have been clear. Last week I went back to my doctors as I felt I was being brushed under the carpet. The doctor I met with said it could be Endometriosis, I don’t know much about the condition and would like to hear your symptoms and how you got a clarrified answer/diagnosis. I do want children and it scares me that I am just being left.

Thank you :)

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With me I didn’t think anything was wrong until one day I had intercourse and it really hurt and bloody/watery stuff came out. Rang gp and was referred for scan then lap. After that it was sharp stabbing pain in lower abdomen, right hip and thigh, constant pain during intercourse, either constipation or very loose bowel movement, swollen belly, fatigue, stabbing pain and aching lower back and irregular bleeding. Now I’m due to have 3rd lap as new symptoms are lower rib pain left side and get bad shoulder and neck pain along with all the other symptoms. It happened so quick for me and 7 months after first symptoms endo was found.

When I was younger I always suffered with heavy periods and bad cramps but thought that was normal so I was put on the pill when I was 16 and was on it throughout until 24 so maybe that masked what was going on. Hope you get the answers and treatment you need x

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Hi,

Thanks for the reply!

A lot of the symptoms you expierence are symptoms I expierence myself. Can I ask how did you get a clarified diagnosis? I hope you are ok x

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My scan showed clusters of cysts and something was thickened. This was 7 years ago so that’s all I can recall from scan and then the lap confirmed endo it was mild. Then progressed over a 7 year period. First lap I’m sure they burned (can’t remember the term for that) second lap 2 years later they cut away and removed scar tissue. Still waiting on 3rd lap. It had effected my bowel so went for a sigmoidoscopy as previous scan showed intestines were all over the place and really inflamed. When I went to GP she thought I had a mass and sent me for urgent scan. After results Gp explained it like squeezing a blown up balloon in different places and it being held like that. That’s what was happening to my intestine due to scar tissue.

Another symptom I get is nerve pain in right buttock and numbness. It’s a awful disease. I was lucky as everything moved so quick from GP visit to scan to lap. But I know some ladies wait years for diagnosis. Keep a diary of pain, when it happens and what it feels like. Push for gyne referral and at least you’ve got that diary to show x

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Again, thank you. I will keep a diary and I will keep pushing for a diagnosis as I don’t want to be left untreated for too long x

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For me, all scans came up satisfactory. I had a lap in Dec which confirmed endo in atleast 2 places. I’m now waiting to see a specialist because the general gynae wasn’t skilled enough to remove it all.

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My scans were all clear, I seem to get sent for a scan then I am left. Good luck with the specialist! Did it all move quite quick for you?

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Yes, it’s been a year since my pains started, and I first went to the doctors in April. It’s important to let the doctors know how bad your pain is, and push for what you want to happen, but at the same time listen. If you’re unhappy with what they say, see another doctor at your surgery. I was first told period pains can hurt, some women go on the pill. I knew that something wasn’t right and kept fighting. Good luck!

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Thank you for the response, I will ring my doctors and request to see another doctor! I will follow you and keep fighting!

Thank you x

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Ask if they have anyone who have an interest in gynae issues! Hope you get sorted quickly

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I will do, I have an appointment next Wednesday with a lady doctor so hopefully I get some where next week. Thank you for all your help and advice, I appreciate it.

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Hiya - 23 year old here, I was diagnosed at 22. My first symptom was painful intercourse, and then later I developed stabbing pains in my stomach and extreme bloating (what you might hear people on this forum refer to as "endo belly.) I had STI tests, pregnancy tests, external scans, and internal vaginal scans. All came up clear. I was then referred for a laparoscopy, which diagnosed me. Most women are diagnosed by lap, as endo can be hard to see on other scans. Try not to worry about the children bit - the majority of women with endo can still conceive, it might just take a bit longer. Hopefully your doctor will refer you for a lap and you can find out more x

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Hello, thank you for reply!

Yes I’ve had all the procedures you’ve had yourself and I’ve been left since. I will go back to doctors and request to see another! It’s already been 12 months, I don’t want to be waiting left longer untreated!

Hope you are okay x

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Hey, You're going through a lot.

I've had a similar experience of it all, have a read of what I've gone through. You can search for it on here or find it through my profile.

"All this effort does pay off - my story - hope it helps !"

xx

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