hi everyone. I’m so sorry it’s a long one and if I upset anyone. I’ve just joined as I don’t know where to turn. So after getting pains from 12 to finding out around 25 I had endo and andneymyosis and pcos, I finally in November 2023 got a hysterectomy. They took everything bar my ovaries. I was lucky as after that operation I had no pain from the op (done by a robot) and no pain from my 3 issues. Fast forward to Jan 25 and I noticed around when I was due to ovulate and have my period I’d get awful cramps, but was managing. Now to these last few weeks this pain that used to come and got for the last few months is perm in my ovaries, back, pelvis and bowels and even my bladder. I know an operation isn’t a cure but never thought within 2 years it would come back like it has. I know I need to try and find the dr that pushed all elements to align to get me my op as she saw how bad I was back then but I’m worried that all 3 are now back again and causing more issues or something else. Apart from my regular pain meds I take through these pains (they don’t do anything) I’m unsure what my next step is! I’m guessing it’ll be more scans but what else can they do? Or do I just need to live with this pain until the end? It’s so debilitating and I’m so upset as want to live my life with my beautiful (yes I know im very lucky) children and partner where I’m not doubled over in pain. This pain I can’t live with forever. It’s slowly killing me and I’d rather not be about if I have no way of living life and working the job I love. I’m hoping someone will be able to tell me the truth about endo etc as everyone on fb and family friends gps have all said no the pains gone forever now, you can live your life (I know the truth deep down). How are you all coping with this horrific pain? Or are we not to cope with it? Sorry from a 32 year old I feel like a baby right now sat in bed crying my eyes out.
endo/adny/pcos pain after hysterectomy - Endometriosis UK
endo/adny/pcos pain after hysterectomy
Hello lovely, a hysterectomy does not cure endo unfortunately and if the surgeon leaves any endo behind then it often regrows very quickly: some women have it return in months. Your womb has gone so you cannot have fibroids or adenomyosis but they left your ovaries because you are young and they didn't want to put you in surgical menopause which makes sense. Unfortunately it's the estrogen in our ovaries and in the endometriosis tissue itself that leads to the regrowth. This could be what is causing you pain. Next, your mental health seems poor, and I want you to see your GP to get help with this. Your ovaries could be pumping out less hormones and you may need a hormone test. You also probably need some anti depressants which could really help stabilise your mood so that you can take stock of your situation and manage your life more.
Finally, I'd try to alter your lifestyle to see if it helps. Once you are strong enough have a good look at your diet, sleep, exercise, supplements and stress levels and make some positive changes to support yourself. However, first things first, ring your GP and make an appointment and start the process of taking your life back xxxx sending huge hugs xxxx
Thank you for replying. I’m going to be bugging gp about seeing gyno again on Monday. I’m currently under cbt therapy due to adhd and suspected autism as well as ptsd and lots of other bits. So slowly working to get better. Last night was just a rough night where I just couldn’t get past the pain or emotions. Got a very busy life looking after the family and my grandad plus working in the district nursing team in my area for 2 12 hour days and 15 on nights 😑 defo need me time again away from everyone. Thank you though for looking out for us who are struggling. Been working on my health with eating habits and exercise etc and now lightest I’ve been in many years. But will defo look into what else might help me to help my pain.
I can remember 1 consultant said if the womb, cervix and fallopian tubes don’t stop the endo pains etc then they would more than likely go through with removing ovaries. But if it isn’t going to help then I’m unsure if it’s worth it.
Appreciate your reply. Thank you again
Good to hear it's a better day today. Keep battling lovely 😍
Sorry to hear you're in alot of pain, please go and nag the GP and gynacologist and find out if there's other treatments available like hormone treatments as well as painkillers , this might help reduce growth of endo after surgery. I haven't been given information at all after finding out about stage 4 endo and years of being misdiagnosed, have had to do a tonne of reading , still am , to see what treatments are available and have found this forum invaluable- you're in the right place 
sending best wishes
Thank you lovely. Will defo be nagging on Monday x
Hi, I'm a 32 year old women. Who is in chemical menopause and has the same issues. I completely understand the pain and the thoughts of living with it forever. It's overwhelming and all you want to do is enjoy your family and your life but you can't.
I have been told by my specialist that a hysterectomy won't cure the endo! It may help with andeomyosis and fibriods but endo can still grow especially as they would leave the ovaries. I would go back to your GP and explain everything and get put back on the list to see endo specialist not a normal gynae and see what the options are. I'm sorry you're going through this!! It's a horrible disease.
Yes my hysterectomy has helped for nearly 2 years but pains are now back. Will speak to gp today to see if there is anyone in Bristol I can see.
Sorry to hear your pain is back. The same thing happened with me. I was pain free and then was in the worst pain ever a couple of years after my hysterectomy. I had another operation after trying to live with it for another 2 years to have my ovaries and cervix removed and also more endometriosis that had grown. I only very rarely get pain now but surgical menopause has its challenges. I found using a tens machine and hot and cold packs really helped with my pain, more than pills that seemed not to help much anymore. I hope you find something that helps. I view my journey as highs and lows now. I've had good years and terrible ones but overall in a better place for the last 4 years now.
Thank you so much. This has helped loads to see that there can potentially be light at the end of the tunnel x
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