Confused and looking for guidance - Endometriosis UK

Endometriosis UK

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Confused and looking for guidance

Link4zelda profile image
5 Replies

New here and looking for advice and help!

Ever since I started my periods they have never been ‘normal’.

After years or trying different pills/ a coil and now being completely hormone free I’m certain that something isn’t right. I’ve had scans and examinations but all anyone has told me is that after I’ve had children I’ll probably find things will be better! (Not helpful)

I have heavy and sometimes extremely painful periods (take tranexamic acid to lighten them) they appear early or sometimes up to a week late durin my period my bowl movements are awful (tmi) I get a lot of leg cramp nausea and head aches. I bloat so much that my normal jeans don’t often fit. I have painful acne all over my face chest and back, I get dark hair that grows rapidly all over my body. Throughout the month I get a lot of cramps and bloating especially around what I assume is ovulation.

I’m at a complete loss as drs don’t seem to listen or believe me and I really don’t know where else to turn or what to do. I just know something isn’t right! Any advice or help anyone can give me I’d be truly truly grateful.

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Link4zelda profile image
Link4zelda
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5 Replies
Freyakv profile image
Freyakv

I’m so sorry you’ve been treated like this, it’s horrible to see. I’m in a similar position with regards to the doctors, been put on the waiting list and forgotten about, my advice would be keep on pushing with your drs, change GP surgery if you need to, it’s what I ended up doing but it got the ball rolling so to speak. Just keep fighting for it x

Moon_maiden profile image
Moon_maiden

Unfortunately you do have to keep nagging the GP, insist on a gynae referral. Sometimes it’s best not to ask, but to say (as politely as possible, not the way I’ve done things at times 😂) that they have to.

The endo UK site has some great info for consultations and diary suggestions.

I gave up towards the end of last and paid to see gynae, but you shouldn’t have to.

Have a look at the info on the site as well about recent parliamentary discussions on endo, might be worth printing it off when you go to see GP.

You’ll get there 🙂

BeeHoneyB profile image
BeeHoneyB

Hi,

Sorry to read about what has been happening and that you were told things would rectify on having children 🙄

Very similar to your experiences you have mentioned I could have written it myself.

Well years later and children I’m still having problems go figure! I sternly requested that I’m re referred to gynaecologists for further investigation as my quality of life was severely impacted.

I hope you get a referral you are entitled to second and third opinions or even seeking doctors who specialise specifically in women’s health as I discovered in my own doctors surgery. Hence why I requested re referral as the doctor I had seen had just given me tablets. Now a few days in on a new medication while waiting my appointment for bloods and scan at my hospital.

Good luck and be persistent 🤗

Link4zelda profile image
Link4zelda

Thank you all for your lovely replies! The baby comment was actually made by a gynaecologist who also gave me and my boyfriend the vibe that we were waisting her time. I waited a whole year for that appointment aswell. I think I’m going to try and fight back through my gp and pay to go private (maybe when Covid gives my job back)

Every direct female in my life (mum and both nans) had hysterectomys before they were 40. All 3 had endometriosis and or fibrosis and suffered the exact same way I do and you would think telling a gp/gynaecologist that they would be more inclined to figure out what’s going on 🤣 back to war it is!!

BeeHoneyB profile image
BeeHoneyB

Hi Link4zda

I’m glad you have the resilience to keep fighting for more investigations. It’s a shame we feel we have to go into battle to get professionals to listen to our own medical history and that of immediate family and join the dots together and get a plan in action to help us.

Good luck and keep us posted how you get on.

🤗

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