Feeling alone.. Advice and support much appreciated!!

I'm just curious more than anything and I feel quite in the dark...

I am 21 and I had my first laparoscopy almost 2 years ago which resulted me being diagnosed with endometriosis. At the time he said that he removed it all and it was fine. My symptoms have come back since and they have tried many different treatments since to manage symptoms such as the coil which has been removed, the implant which I currently have and also the prostap injection as well as the pain medication. The injections have worked but almost 2 months since my last injection I started feeling symptoms again so my consultant is going to give me another laparoscopy. He said there is a possibility that he may not find anything but the pain has got to be coming from somewhere. When I bleed it's the worst pain I've ever experienced but the pain also occurs when I'm not bleeding. What else could it be? I've had a colonoscopy as well as done stool samples but surely if it was IBS they would have told me??

I'm sorry for the rant, I just feel a little alone despite the support from y boyfriend. I feel abit lost and I'm so fed up of this pain affecting my everyday life. I can barely cope with work and I struggle to pay the bills...

Anyone have any similar experience or can give me advice or support?

Thankyou!

9 Replies

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  • So sorry to hear your suffering so much, endometriosis really is a horrible condition and you have my full sympathy, and I can say I do no how you feel. I am 33 and have been having a horrible time for the last 4 or so year with periods and pain.... Originally started with bloating and diarrhoea frequently so also had colonoscopy which was normal, then told intolerant to dairy and had ibs, periods got worse .... Passed out in shower in so much pain and finally got referred to hosptial for scan, first scan the scanner lady asked if heard of endometriosis , to which I had not ( she obviously new her stuff) told I had lots of cysts on right ovary.... Bck to gp.... Said could b normal sent for repeat scan.... Larger cyst finally referred to gynaecology .... Rather painful hyroscopy ( spell?!) then finally laparoscopy 5 wks ago. Was actually relieved they found an answer- stage 4 endometriosis , figured am now cured.... Not so much my body decided to hav another period which was the worst ever and couldn't walk because of pain, apparently next one should be better as it's so close to my surgery I do hope so. You are most definitely NOT ALONE in this and please take a small amount of comfort in that, talking about it is good and glad you have some support. Maybe keep a diary of all your symptoms so you can track when it is in your cycle. I've been on the endometriosis uk website and phoned there support sight they are very supportive and have some good suggestions and the person answering also has it, so that a a help. Keep talking, keep a hot water bottle close by and topped up with painkillers, take care xx

  • Thankyou for Sharing your experience with me! It's nice to know I'm not alone. I'm just afraid that they don't find anything and I'm back a square one! I feel like I have been going round in circles for years and I just want it sorted as I just feel exhausted and really worthless most of the time now. If the endo hasn't grown back then I hope they find the answer and sort it out soon!

  • Hi, im so sorry to hear that your also suffering with Endo! its so horrible! I had my lap a year and a half ago and was diagnosed with endo, and they noticed that I had something wrong with my bowel, they organised an urgent ct scan, that showed that my bowel has loops and gas in it, I then had a colonosgypy, that showed that my bowel is normal, I am now waiting for my results of the biopsys they took, and waiting to see my doctors, I waited months to see a bowel specialist! Did your colonosgypy show anything? I hope you get the answers you deserve! if you ever want to talk just message me privately and ill get back to you as soon as I can, Good luck! stay strong xx

  • Oh really? Does that mean that during the laparoscopy they will be able to see if my bowel is okay? It's just horrible! My colonoscopy was fine and I've also done stool samples aswell ad nothing showed up there either. I just feel like I'm being passed from pillar to post and I just want to know where the pain is coming from so It ca be treated! Endo is a horrible thing! I just want to be able to go to work and not be limited to what I can do because of the pain xx

  • I feel exactly the same that im being passed from one doctor to another and not getting many answers what so ever! Endo is a horrible thing to live with no matter how bad it is or how old you are! They should be able to see if the endo is on your bowel, if it is then they might want another colonosgypy to see if its in the bowel, but if it showed clear the first time i highly doubt it that i would have gone into your bowel unless its been a while since youve had it!

    Ive done all the tests too from ibs to bowel cancer because they dont seem to know whats going on with my bowel! Everything came back clear! Do you feel that what you do in your day depends on how bad your pain is?xx

  • Oh okay! Well I hope they find something because this pain has got to be coming from somewhere!

    Yeah I feel like if I do heavy lifting or move around a lot it makes it worse and I find that I'm just so exhausted all the time. It affects my relationship as I can't have sex or be close which makes me feel so guilty. It also affects my social life as my friends have a lack of understanding and don't always get it when I cancel plans when I'm having a bad day! Xx

  • Im exactly the same! it affects my friendships too! they dont seem to understand the pain, they say its just a bad period or its just a bad day, or stop making all of this up, it cant be true! I hope they find whats causing you so much pain! its not fair on you! I feel that im constantly exhausted, no matter how much sleep i get, i hope you get to the bottom of this!xx

  • I know that feeling trust me! I can count my real friends on one hand and they're the ones who actually get it! Luckily I have an understanding boyfriend! If you want to chat more message me sometime or something! Been good to talk to someone who understands xx

  • Thank you! i shall pop you a message xx

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