Endometriosis UK
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Advice needed if anyone is in their early 20s

Hi, I've had an underlying issue with my periods and agony in my lower abdomen area, this started when I was 13/14 I started having my periods needing days off school as the clots and periods were so bad, just 3 years ago at the age of 19 I had my first laparoscopy to see if I had endo... nothing was found and I was just told I needed to deal with the pain, clots and bleeding. Fast forward to July 2016 I had my second laparoscopy due to pain and excessive bleeding and clots again... again nothing was found this time I got told to go on a wheat and dairy free diet, still didn't help and I've had pain on and off until this day... again I've had blood tests and ultrasounds recently as doctors can't understand what is going on.... am I going mad or does this sound like endo?

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I'm gluten and wheat free and tbh it's helped a little but I'm still in a lot of pain. I was suspected endo but still waiting for a lapto confirm and deny, though I'm thinking they won't find any but I'm 100% sure it is! They're trying to fob me off saying it's IBS or something else but like I know what I feel, and I'd 100% keep fighting if you know something isn't right with your body x

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Hey lovely💛

I'm 20 and you sound very much like me!!

I started my periods in 2011 and always suffered from heavy / painful periods and went to the doctors several times complaining of a pain in my side but I was fobbed off with it just being "period pains".

In 2012, I started the pill microgynon to try and combat the pain. It did work, the bleeding eased and became less painful. Things seemed well but I knew it wasn't a long term fix.

In February 2015, I got the implant fitted because the pill just wasn't suited to me any more and I was in a long term relationship so I wanted a more long term contraception. Again, all seemed fine!! My bleeding totally stopped.... so I thought.

In August 2015, my bleeding returned, along with every other endo symptom and the pain more than anything. I was dismissed by countless doctors and passed from doctor to doctor, with no answers.

In June this year, on 30th, I had a laparoscopy under a general gynaecologist which I fought so hard to get.

I was DEVASTATED when I woke up only to be told all "appears normal".

So, I went back to my GP and demanded a referral to a BSGE Endo Centre but after calling them, they told me I would have a very long wait and I can't do that.

So yesterday, I went back to my GP after doing some research. I have found a gynaecologist who specialises in endo in Glasgow and my GP wrote to that gynae dept specifically asking for him.

Now I just need to wait. Again...

But hopefully, I'm on the right track now.

The key is you need to do a lot of the work yourself. You need to research and you need to tell your doctors who you want to see.

Keep pushing, don't give up!! X

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Oh and is recently went gluten & dairy free to see if it was that and it's made no difference!

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Hi all, I'm new here and I hope you don't mind me suggesting that where the gynaecologists have performed a laparoscopy, and found no endometriosis then you may be suffering from adenomyosis instead. This is different to endo in that while endo tissue will grow outside the uterus, and around other organs, adenomyosis actually grows inside the uterus wall, and it therefore can't be picked up by a gynaecologist unless they remove the uterus first, and then do a pathology test on this. That's what happened to me after years of pain, and a laparoscopy, i.e. only after they did the hysterectomy did they find I had adenomyosis and a single fibroid inside of me. Do read up on this, if you've got a moment.

Unfortunately, because my ovaries were preserved, I've endured acute groin and vaginal wall pain for years now and have asked my gp to refer me back to gynae to check if I now have endometriosis as the pain is excruciating, except for the uterus pain that almost drove me over the edge when I had it.

Sorry for the long post!

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Keep persevering and find a doctor who will listen. It took me over 20 years of severe pain even on the pill before I found a sympathetic ear. She recommended a hysterectomy as by then the scarring was so bad I was unable to have kids anyway. The op has changed my life. No pain since it was done. However years of being on the pill has made me estrogen dominant with the bad effects of that now that I'm going through menopause.

Sorry I know you wanted advice from people your own age, but I still remember clearly the 2 days every month of lying in bed in pain and vomiting when I was 20 and wanted to reach out.

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Update!! Heard from the hospital today I go to see a consultant on the 9th at a private hospital hoping I get good news and I can have my 2rd lap and I'll get a diagnosis 💛

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