Diagnosis: About 2years ago i had a... - Endometriosis UK

Endometriosis UK

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About 2years ago i had a laparoscopy to find out i had endometriosis in 5 places this was all i was told and that i should be ok now after they had cortorised it.After reading up about it afterwords i realised there are stages of severity and where you have it but i never got told.As i am getting more and more pain again in my hips,lower back and ovaries and also are opening my bowels and bladder more regularly and also feel very inflamed the week before through to the week after my periods. Is there any way i can find out my diagnosis now?

10 Replies

If I were you, I would see my doctor, tell him of the return of symptoms and ask him to refer back to your notes from your previous Lap. You will probably have to have a new referral but it will be a good start to have all your previous details and diagnosis of Endo.

Hope your pain is minimal today xx

Thank you for your opinion.I am in pain today i just feel achy and pain around my pelvis everyday and if i do anything like chores i just want to sleep as i feel exhausted. I was thinking about going back to the doctors but im just a bit worried as i have a new one and i havnt been yet since i registered and i feel like ill be going back to square 1.i got discharged from gaeni tho a couple of years ago as i had hormones injection and painkillers and thy said there is nothing more they could do for me as the treatment isnt working so they think it is now my bowel causing the pain as i have IBS but this comes in fits and starts and doesnt cause pain where i have it. But the most annoying thing is i got told it was my Ibs for the 3years it took me ti get diagnosed with endo.Its so frustrating.

Also as it was a long time ago when i first went to the doctors with symptoms i would just like to compare with other sufferers.My symptoms now are tiredness, exhaustion after some activities.Constant lower back pain.Constant pelvis pain and aching.(sometimes numbness) sometimes hip pain which doesnt go away with any painkillers. Sensation or pain of something in my stomach around my belly button and pulling. Sharp pains in ovaries occasionally and feeling of inflammtion in ovaries especialy when urinating that theg could explode. Pain during sex often times worse than others and hard work turning over in bed when got stomach pain. I often feel faint and struggle to breathe when in pain. Can anyone correspond to this as i want to make sure this is still my endometriosis before j go back to the doctors as i also have endometriosis and ibs.Also my bf advises to try a tems machine has anyone tried this? X

I mis wrote that i also have polycystic ovary syndrome

Hey, i am awaiting my first diagnostic lap, but have all the same symptoms as do many on this site which is why i believe i have endo.

You are allowed to request your op notes, it would be worth it.

Even if it is like going back to square one, it won't be same as before as you already have a diagnosis and your wiser than previously as to how the system works and your symptoms. Trust your instincts and don't be fobbed off.

My boyfriend brought me a tens machine for xmas and it has helped sooo much! I really recommend it as meds weren't helping me or just made me feel out of it or nauseous. It's worth paying an extra £10 to get an advance one as they have more settings and smoother delivery of current so it doesn't sting you. Now i use tens and my heat bags all the time and add painkillers on top when really bad day.

Good luck x

I will defeniately purphase one then.And can i request them through my doctors as i went for my op through gaeni? X

Your gp notes will have a basic result of op but if you ring gynae secreataries and ask them your hospital notes will have full detail of what they found in op. sometimes you are charged a small fee, but to put your mind at rest i would say its worth it and will help in future follow ups knowing whag they found. Good luck x

Thank you for your help xx

You can contact the hospital and ask for a copy of your medical records if you want to know what they found - you have to pay a small fee to cover the costs but it's not much.

Regardless of what they found you need to see a gynae again - endo can be treated surgically but in most people it does return as its incurable. Are you on any hormone treatments or painkillers in the meantime? Please speak to your GP and ask for a referral, preferable to an endo centre or specialist if there's one near to you.

If you've been diagnosed with endo in the past, then you have the condition whether they removed it or not as it's very rare for it to never come back. If they operated and then discharged you permanently, they clearly don't really understand the illness - they should have put you on the pill or similar to keep the endo at bay and give you yearly or six monthly appointments to monitor you. Therefore I'd ask to be referred elsewhere as they're clearly not very clued up about endo!



I would really like a copy of my medical records but what would you call a small fee? For an example.i had an operation where they removed the patches but its gradually coming back.im not in agonising pain every day.but it is constant and gets me down

.i have the dull aching pain in my pelvis/hips everyday without a doubt. But i work 5 days out of 7 and every day i have to take ibuprofen for the pain in my lower back,pelvis and ovaries area otherwise when i go numb and start walking slower and just want to sit down all the time. Altough when i do sit down i can feel it more. The painkillers has become dependant though where as before it was a now and then thing or jusg during my period. I tried coming off the contraceptive pill before but when itcame to just before my period i doubled over in pain and couldnt sit down or hardly move as it felt like i was sitting on a jnife through my right ovary.so i am now back on the pill. But the inflammation around my ovaries is becoming more regular they feel swollen all the time.and whilst i was waiting for my period to actually start on my regular sunday the pain was that bad i nearly fainted 6 times that day and i have known to faint a few years ago in same situation x

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