Suspected Endometriosis: Hey everyone 👋. I... - Endometriosis UK

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Suspected Endometriosis

Rararae
Rararae

Hey everyone 👋. I've had issues with my periods since I was a teenager but I've always been brushed off when I've gone to the drs for help for them. Paracetamol and ibuprofen doesn't touch the pain and I spend at least three days of my period bed bound. Last year I was diagnosed witho PCOS and I've had trouble conceiving a baby. I've had two misscariages and and ectopic pregnancy in the space of 7 months. When I had my surgery to remove my tube the surgeons found and adhesion in my womb and said they had to cut through it to reach my tubes, (are adhesions a possible indication of endometriosis?) I mention all of this because this was the beginning of a wake up call for me. The pain of my misscariages and the ectopic pregnancy were no worse than my normal period pains. The only difference was that the doctors gave me stronger medication to help. I went to a newer GP at my surgery and she thinks there is a strong chance that I have endometriosis.

In an ideal world I wouldn't have anything wrong with me but seeing as this isn't a new occurrence, I just want to be diagnosed with something so I can get treatment for the pain and help to have a healthy pregnancy. I feel like I'm going crazy, so many dr's have told me it was normal period symptoms that now I'm actually being taken seriously I'm beginning to doubt myself.

I'm so scared that I'm going to be told it's all in my head and I'll be back to dealing with it alone. The real kicker is that the pain lasts past my periods now. I get maybe a week out of a month, pain free and I'm finding it really hard to cope with emotionally. Just always being unwell and not being able to do the things I want/need to do. How do I cope with this? Is this going to be my new normal?

Sorry for the long post! You're heroes if you read this far lol. X

6 Replies
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Hi Rararae, I'm so sorry to hear what you have been through, with the pregnancy loss and pain. Adhesions are typically what gynaecologists call endometriosis - it's often what they write reports, rather than staying endometriosis (rather unhelpfully!).

Did they not tell you whether they removed the adhesions fully? If so you should hopefully stop getting the pain. In terms of treatment for endometriosis, all there is really is surgery to remove the adhesions and then hormone treatments to prevent you having periods (thus reducing pain), but they obviously can't do that if you are trying to concieve.

So you really need to find out whether the endo was treated when you had surgery.

I currently have active endometriosis and am trying to concieve. I'm waiting for surgery and then my gynaecologist thinks I should have a good 6 months of trying to concieve naturally before possibly having to try IVF if I have no luck as I'm 36 and don't have much time!

Rararae
Rararae in reply to Kategilli

Thank you ♥️. I didn't know that, I think subconsciously I was wondering if it was endometriosis but I thought if it was why didn't she tell me?

The consultant said she cut through the adhesion to get to my tube so it may well have been left there I'm not sure. Due to the urgency of the surgery, I'm not sure if they had the time to evaluate it properly.

Side note, but it was all a bit dramatic if I'm being honest lol. I requested she was the one to make all the final decisions when I was under because I wasn't sure the original lead consultant would have because he hadn't previously. My main priority was to make sure that I was safe as I've got a little girl at home.

I'm glad I did too because she said they had a "discussion" over the operating table and the other consultant wanted to close me back up because he thought it may have been misscariaging naturally but not only was it completely attached when they removed it but it looked like it was close to rupturing!

I guess I just need to wait and see what they say at my appointment. I really hope your surgery goes well and fingers crossed you conceive in the 6 months they've given you. Xxx

Hey sorry to hear how much you have had to deal with. I have PCOS and endo and adhesions. My adhesions were from a previous appendix removal but endo and adhesions can go hand in hand that what my surgeon told me. Don’t dought yourself I struggled in silence for 5 years and it got me no where. I would request to see a gyne through your dr or you could look to go private. I thought I’d This my new norm too. But I currently going through different medications to find what works for me so I can function and work normally. At the moment I’m on double does of mini pill Amitriptyline low inflam diet and lots of vitamins. But take baby steps xx

Rararae
Rararae in reply to Hannah0091

Thank you so much for replying. Receiving comments from people like yourself goes a long way into making me feel a lot less delusional.

I had a c section with my first child, I wonder if that caused the adhesions.

Currently waiting for my appointment with at the gynecologist department in my area. Im sorry you're going through the pain and everything that comes with it. I was thinking of adjusting my diet too, I don't suppose you have any resources; websites, books etc about low inflammation diets? I didn't know where to start.

Hannah0091
Hannah0091 in reply to Rararae

Hey, your welcome. It horrible to feel alone I completely did and it was souls distorting. Now with this group I don’t feel alone 😊

Good news! I hope it goes well I would suggest to write everything down symptoms and previous diagnosis’s and any other relevant info

I would defo read “a whole new you” by tia mowry. It’s really interesting & she explains how much amazing food you can have. also I would do a good search on low inflammatory foods and try it. I really like a drink so I don’t cut alcohol out and it’s one of the worst but I have cut coffee completely dairy and lowed my gluten I stay away from processed and try to eat more whole foods.

I hope this helps x

Rararae
Rararae in reply to Hannah0091

It was really helpful thank you. I'll definitely keep a logic my symptoms. I've been doing a pain diary of sorts so shouldn't be too hard to adjust it. I'll have a look at her book too! Xx

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