Advice needed! Is this endomitriosis?

Hi everyone,

I'm new here and looking for advice as i feel like i'm going crazy! Any help would be so much appreciated!

Since i started my period i have always had the heaviest and very painful periods which kept me off school for weeks and sometimes lasted nearly two weeks. My doctor put me on the pill at around age 14/15 as my iron count was low and things seemed okay. I came off the pill when i was 20 for a few years and gradually my periods became heavier and got back to being so painful again. Within the past year i have noticed a lump in my groin which comes around every 6-8 weeks and then dissapears only to return again. It seems to be cyclical which made me think it was somehow related to my cycle. Also, every 3/4 weeks i have chronic pelvic pain and extreme fatigue along which nausea which has kept me off work for a few days.

When i went to the doctors they mentioned endomitriosis and put me back on the pill. This seemed to help things for the first three months but then i was getting really bad pelvic pains to the point i couldn't move. I ended up calling in sick for work one day so i went back to the doctors. I saw a new doctor who said it didn't sound like endomitriosis but sent me for an ultrasound to check for a hernia. I know it isn't a hernia as i've had one before and this feels different.

I just feel really confused and i've started keeping a diary of my symptoms to show my doctor. Hopefully it might make him take more notice. So i don't know if this is endo as i keep being told different things but i don't know what else it could be.

I should also note i was diagnosed with IBS when i was 18 and i'm currently 28.

Any help or advice would be great. I can't afford to go private and my doctor seems reluctant to send me to a gynocologist so i don't know what is the next step for me.

Thanks everyone!

8 Replies

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  • Did anything show up on your ultrasound? Although ultrasound is not conclusive for endo (because you can have endo and a scan comes back clear) but I was initially diagnosed by ultrasound - I had large ish endometriosis cysts X

  • When i was there the lady just scanned on where i said the lump had been and then told me that there was no hernia. So i said i thought i'd been sent to check for signs of endomitriosis and she said she will have to check the results more carefully and they will be with my doctor in a week. On friday it will be a week so i'm hoping to find out then. I just feel so confused as she seemed to be only checking for a hernia.

    Thanks so much for replying. When you had your ultrsound where did they scan across? I hope you've found a way to deal with your endo xx

  • My scan was across my lower tummy.

    I actually had 2, a private scan initially because my GP had advised my symptoms were just 'how some women are'. So eventually I paid to have a private scan, this included an internal scan. I then went back to my GP with the results (2 cysts, fluid in abdomen, concerns about pouch of Douglas). I subsequently had an NHS scan over my lower tummy and they said they were certain from this I had endo and I was given a date for a laparoscopy. X

  • I hope i don't have to go private as i can't really afford to. But i will see what happens on friday with the results and go from there.

    Thanks for your help it's been very insightful. xx

  • My private scan was £100 so not a fortune. It was worth every penny to finally make some progress :) X

  • I'm going through a similar thing the doctors that I have it but keep passing me onto different departments instead of seeing if it is have another scan tomorrow and i hope you get sorted soon :)

  • Hope your scan goes well today and thanks so much for your reply. It's nice to know i'm not alone but also very disheartening to see that so many women are having trouble with diagnosis. I read on the Guardian that on average it takes around 8 years to get a diagnosis!

  • thank you so much and your very welcome i think some doctors just don't understand the illness that well thats a long like to wait for a diagnosis! :O

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