My pain is worsening : Hi everybody, I've... - Endometriosis UK

Endometriosis UK

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My pain is worsening

rambogoulou17
rambogoulou17

Hi everybody, I've been diagnosed of endometriosis last year and i'm 16 now. I had really bad pain back then, and the thing that alerted me was that I had pretty bad pain in my butt too during my period. I only had those pain in my first day of period or the day before but it was pretty strong. When I went to the gynecologist, he diagnosed me of endometriosis and he prescribed me some sort of contraception? It was supposed to stop the pain and all (I don't remember it that well I'm sorry) , so I got back home and took one medicine only, the side effects my mom read was pretty abnormal and really bad so she decided to throw them away. I stopped taking them completely and the pain I usually had stopped for about 11 months. So in February this year, I was supposed to have my period but I only got one day of spotting, I knew something was down but did not insist on it. (I'm not sexually active) so Monday (this week) I had really really really bad pain where I used to have period pain before, it was really weird to me because I didn't expect it at all. I had this pain for 4 days. Constent pain. It was horrible. Then on the morning of the fifth day, I got my period but the pain was still here. Second day of period and I still have pain. It's starting to calm down now but I'm afraid that it's going to worsen. Also, I use tampons and everytime I insert them I feel a really sharp pain in my uterus kind of? Can someone help me?

10 Replies
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Hi sorry you are going through this at such a young age. It’s scary when you don’t understand what’s happening to your body.

Have you had a laparoscopy to diagnose endometriosis? An MRI to check for adenomyosis?

I have both conditions. It gives me heavy bleeding, pain across stomach and down legs, anaemia. The bleeding and pain is all over the place and no pattern to it at all.

Maybe try and use pads if a tampon is too sore. I think that’s a common side effect of these conditions, you can feel very sore inside too like pain is coming from the uterus and ovaries.

In my opinion the pill has can slightly reduce bleeding and pain but not always.

Can you take your mum or someone else your are comfortable with in with you next time you go to your GP and ask for a referral to gynaecology? It’s often better when you have support xx

He did and MRI and said that there were no tissue formed yet I think, it's been a long time since I did not have to think of that so I don't really remember ( being the careless teenager I am) anyway, I hate using pads, it honestly make the pain even worse(it's itchy) 😂. He said that I was too young to do a laparoscopy and do one when I would grow a little bit more so I guess I'm waiting, I didn't really care about doing all of those but I live an island where gynecologist are kind of conservative. And for seeing another gynecologist, it's kind of hard, gynecologist here are pretty incompetent and charge a lot for a little/bad/brutal service.

Hi hun,

The only way to be sure is to request for a lap to be sure and take control of your health and not be stopped by it being a small island and actively seek out the help that you need as from my experience it was pushed and pushed until 10 years later they finally diagnosed it so my advice to you would be not to wait and to request that it is investigated properly and sooner rather than later to give you relief mentally as well as physically. Try cutting gluten and dairy out if your diet as well as red meat and see how you feel - it wont be easy but if it gives you some relief and you desperately want that then I would give it a try and be consistent with that xx

Okay thanks, I'll try cutting with those, unfortunately I can't seek for help now because of the virus( we are in complete shut down) anyway, thanks for the advice :)

Most welcome! As soon as it's over get on it and speak to someone and dont long it for 10years like I did waiting for what the experts will say

Yess thanks :)

Hi it’s such a lot to be going through so young. My advice is if you find that tampons that can make it worse. I use the moon cup and that helped - it was less painful than tampons and not as annoying as pads. It’s also good for the environment 😁 I would definitely go see your specialist and get in some treatment as you don’t need to suffer in such pain. I hope things get better xxx

I don't have money for the moment :3, but I'll try the moon cup for sure, thanks for the advice :)

Hiya

Sorry to hear you’re having such a bad time :(

My story sounds a bit like yours. I was 14 (now 28) and had been off school for about 6 months before I was diagnosed. (I also had my appendix removed in an attempt to easy the pain because they thought I would be too young to have gynaecology issues).

I finally had first laparoscopy for endometriosis at 15. Although it’s a young age it was definitely worth it because I didn’t have my next flare up until I was 19. I wasn’t completely pain free after the surgery but it made a huge difference.

I also used to get the sharp pains you described when I used tampons and I also hated wearing pads because they are uncomfortable. I would recommend trying pads which are used for bladder weakness instead of period pads because I find they are less itchy...worth a shot 🤞🏻

I am currently having a bad time myself at the moment but this time my gynaecologist has recommended Pregabalin for the pain which has helped me a lot. (This is the first time this medication has been recommended). It took me while to adjust to them, at first they made me very dizzy and I didn’t feel them helping much but after a few months the dizziness went away and the pain relief started kicking in.

It may also be worth buying a TENS machine. There is one called Ova which is specifically for period pains which I use when I’m at my worst. It’s very small so you can wear it under your clothes. I bought mine from amazon for about £30.

amazon.co.uk/gp/aw/d/B00PIS...

I really hope my advice can help to make some difference to your pain. If you have any other questions I’m happy to help where I can xx

Ohh thanks really, that helped a lot. I'm going to try all of your advices one by one so I can see what's best for me. Thanks again :)

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