Endometriosis UK
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Getting diagnosed

Hi guys, so basically I’ve recently been seeing a gynaecologist and he thinks my symptoms lead to endometriosis.

I was put on the pill for 5 month and it made me 100x worse, my moods were horrific and I just couldn’t cope so after stopping them he is now telling me to go on a different pill.

Just wanting peoples opinions on how you deal with it/how you were diagnosed?

The consultant isn’t willing to do anything other than try and manage the pain which isn’t working currently. I’m only 17 and I miss a lot of college due to constant stomach pains and being sick before and during a period.

Any help/advice would be appreciated sorry for the lengthy post.

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I so sorry you're going through this. Especially at your age. I'm no expert and have only recently been diagnosed but I thought a few of my experiences may be relevant.

Have you asked the gynae why they aren't testing you for endo? There may be a reason.

Have you stopped my the pill yet? I'm just wondering what your symptoms are like off it. The reason I ask is that I had horrendous gastro issues (the worst pain & bloating) as well as fatigue and they suspected endo. While I was waiting on my laporoscopy, they suggested I go on the pill as it may help. I took it back to back with no break for 3 months. It really did reduce my symptoms drastically. The laporoscopy didn't find any endo so I stopped the pill and my gastro issues have never gone back to the way they were, that was 2 years ago now. The gynae thought that the pill may have "reset" my hormones. I've since been found out I do have severe endo so it's not a straightforward issue but I think taking the pill did stop a particular part of my endo bothering me (and I do wonder if staying on that pill would've helped 🤷) . It might be worthwhile seeing what your body is like now without the synthetic hormone. Things may (hopefully) have improved.

From my own experience, I'd also point out that different pills really do have a different effect. When I was younger, I'd tried a few pills as contraception but just couldn't tolerate the side effects. I was a nightmare on them and tried quite a few. I was so reluctant to try it before the laporoscopy but I was pretty desperate. I can't remember the name of type of pill I tried but I do remember the dr saying there was a reason they thought this particular one would possibly help. So I would say, it may be worthwhile trying another.

Good luck with it.

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Hi thank you for that! All I get told is that they don’t want to do a laparoscopy yet and I’m guessing it’s because of my age. I have stopped taking it yeah and I’m just as bad again now. Being sick before each period again and in constant agony. I suffered bad on the pill a few year ago so was on two a day this time and it didn’t make a difference.

It’s just so hard to think about starting a new pill and going through the same process, especially as I’m on antidepressants already and these had to be upped when I got put on the pill.

I just wish I knew for sure that I have it rather than playing a guessing game :((

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I'm sure they are reluctant to do surgery. Maybe they're hoping it's a hormonal she thing and things will settle but it sounds like it's really impacting your life. I really don't think there's enough offered to people trying to live with these problems. There are lots of things that could help, it should be offered as routine. I'm really sorry you're struggling.

I've been under the impression for the last 2 years that my health difficulties were stress related and psychological. So I've been left dealing with it without any medical help at all. I didn't set out to do this but what I've ended up doing is building up my own type of support and treatments. I see a chiropractor regularly which I feel really helps with my lower back and hip pain, I've seen a holistic practitioner who did all sorts of things like acupuncture, myofascial release & cupping, reiki, reflexology. I did a meditation course & now meditate daily. I do yoga every day, it helps me so much - body and mind and how active it is just depends on how I feel that day. Mostly I do yoga with Adriene videos on YouTube, she's amazing. All of this hasn't cured me, I still have fatigue & pain and lots of problems but it helps me cope. This has just been what's right for me and it might be different for you but I fully believe there are lots of other things out there that will help. I'm not at all saying forget the medical approach but maybe add in something else that will help you. I know it's helped me. X

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Hiya,

I was in the same position as you they done tests more to rule everything thing else out (std, cancer, cysts, etc.) i was about 17/18 I believe when all that was happening and I was told it was due to my age that they didn't want to do surgery, at nearly 23 I'm being told the same thing now! Honestly I would rather have pain management over surgey anyway but don't really get much support in the way of pain management - my last doctor told me really the only good painkiller is the one that doesn't work for me any more but thats a different issue.

I had to try about 4 or 5 different pills before I found one that actually agreed with me so it could be a case of trial and error, or I was advised that getting the coil in some cases can really help with endo but I have never tried it, maybe you could try that instead?

Not sure if it will help you at all but I find cafine makes my endo 1000 times worse when I am on my period so I avoid that, maybe there are certain things that trigger it to be worse for you that you could avoid?

I hope you find something that helps you!

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