Endometriosis UK

Thinking about the big surgery.. Hysterectomy.. I can't handle this pain.. Anymore :(

Hello ladies. I pray for each of you everyday - fighting this battle no one can see or feel but us. I've been in constant pain since I was 16, first it started in my vagina, heavy periods it would come. And then one day the pain just stayed. Got tested for every type of disease. 2015, April 10th they did the laproscopy on me, before the surgery they said if there's any endometriosis we will remove it. Guess what, I woke up from the surgery wanting to die. The consant pain in my vagina was still there. They scrapped my uterus and sent it to biopsy. They only seen little white crystals and they only removed some. They phoned me back a few days later stating it was confirmed endometriosis. Ever since then I've wanted to get a hysterectomy. I've had one son in these 4 years of constant pain and I never had pain at all. Please someone tell me if they had a hysterectomy that there pain went away at all? Some women say they've had the big surgery and they still had pain.. I can't take this anymore.. It's spread all the way up my back this pain where I can't even get out of bed. Endometriosis has taken over my life. I've been on pain meds I'm sick of it all.. Is it worth getting a hysterectomy? Please someone help me.. I'm going to talk to my doctor about it on the 15th. Suppose to be a endometriosis doctor but he has no clue what it feels like to be in pain every moment every second of the day.. He try's meds on me that don't even work.. I don't want to feel sucidal anymore because of my pain

4 Replies

I meant to say when I was pregnant I never had any pain at all.


I know exactly what you're talking about. My back pain is just hell and it is totally taking over my life. I am lucky in that I only have it for about a fortnight a month and when it's gone I'm totally fine. But when it's there....its awful. I sometimes worry that Ive a really low pain threshold and its not really as bad as I seem to think it is. I guess that is because it is hidden. My next step would be hysterectomy too and Im totally with you in that I don't even know if it would get rid of the pain! Do speak to your dr on the 15th. Maybe even write down how you're feeling so that you definitely get everything across at your appt. Don't hold back - make sure he realises just what a negative effect this is having on your day-to-day life. This is your life and you deserve to be pain free. Good luck x


Hi there, I'm so so sorry to hear of all the suffering u are going thru. Your story is sooo similar to mind. I'm 42 yrs old and I am terrified to have a fully hysterectomy only because 15 yrs ago I had a laporascopy and they removed a big chocolate cyste from my left overie when they got in there the overie was cut in half already. The pain was sooo bad. Them yrs later till this very day when I'm on my period my left side where they removed my overie sting and burn and hurts sooo bad it feels like a hundred times worse than labor. I feel like just dying. I found out it could be a nerve entrapment (PNE Pudendal Nuralgia) look that up online if u can and it mite be something of that nature? Also lots of vitamin D3. Calcium and magnesium, vitamin C, and most important a good (liquid) form of B12. All these vitamins are amazing to help take the edge off!! I take Natures Sunshine brand they are the purest ones out there that don't get u sick that I absolutely love!! My marriage is pretty much over this disease has taken over me as well as I only have 4 not so painful days of the month the rest I'm going to the hospital during and after my cycle for pain management. Morphine doesn't touch it. Maybe try accupuncture I did it a few yrs back and I got relief. And try different herbs to help balance the hormones and help with pain. When I was younger these things helped but now I'm at stage 4 endo and no gynecolist wants to do a hysterectomy on me because it's so advan e and I would have phantom pain afterwards they said. But remember u are not alone in this fight we have to remain strong! Nothing ever stays the same...we have this disease for a reason to help us be stronger humans and perhaps be compassionate to others when we see them in pain. You are so strong to endure this!! Hang in there and keep us posted!!!☺


I'd recommend taking a look at hysterectomy associations website as lots of info there and the forums helped me through my TAH and BSO in Feb 2015.

Make sure your surgeon is BSGE approved and if not get transferred to one. Mine wasn't and he left endo behind believing it would die off as ovaries removed - it doesn't!!!! So I had another lap but still in loads of pain and v tired and depressed.

Now with A BSGE clinic and they took me off HRT (I was 43 when had op) as felt oestregen only or combined HRT were feeding endo so am trying with nothing for now. I'd had a bone scan and that was normal and I take Menopace and other herbal things to help menopause symptoms.

As I had v heavy periods and adenomyosis and ovaries badly affected I'm glad it's all gone but do wish Id seen specialist BSGE so that endo was removed properly and then hopefully I wouldn't still be in this pain 18months later. And maybe I wouldn't have lost my job and be unable to work thanks to pain and tiredness.


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