Can endo return after total hysterectomy???

[Gwen172]

Well, I never thought I would be here! I had hysterectomy over 24years ago due to severe endometriosis. I had suffered with constant pain every since. Thought after hysterectomy all the endometriosis would have gone. Only just found out that there still could be some left. I am shocked and stunned. Anybody else like me? Would be very interested to chat.

[lizalily]

My mum is like that she had hysterectomy 30 years ago and had 5 ops after it got additions which was no doubt the endo returning . As all her organs were stuck togeather . My mum

Has been constantly suffering with pain now got oestiprsios if the bones from having hysterectomy and now has bowel problems due to endo.i have endtrioma cysts and a fybroid and suffer with my periods but the pill is calming it down . But now I

Have another issue as had to have biopsy on my breast 2 days ago do worried out of my head to say I. The least. X

[Gwen172 in reply to lizalily]

Can I ask if your mum had her ovaries out? Mine is definitely worse after coming off hrt. Dr is looking into this. Thanks for replying. You sound like you are having a tough time too. Good luck with everything. X

[lizalily in reply to Gwen172]

She had hysterectomy first then a year later 1 ovary out as she had poly cystic ovary then 6 months later the other ovary out she had 5 ops in total not good is it . Ye it’s a horrid time for me at the moment I’m trying to keep busy u know block it out of my head x hope u get better x

[Sez73 in reply to lizalily]

It may help put your mind at rest a little bit but I suffer v bad endometriosis and had to have a biopsy on my breast too. It was found to be what’s called a fibroadenoma which is basically a harmless benign growth which is not cancerous and will not turn cancerous. I was out my mind with worry too but was relieved to hear it wasn’t serious. They didn’t bother removing it and it’s still a hard lump now which sometimes hurts if I lie on it wrongly, they’ve said they wouldn’t remove it unless it was really causing problems. They saw about 4 other smaller ones on an ultrasound scan, fairly common when a lot of hormone disruption with Endo. Probably doesn’t stop you worrying but just wanted to say from my experience if that helps at all. Good luck x

[lizalily in reply to Sez73]

Thanks so much for this as it’s put me at ease the thing is I don’t have a lump I had a shadow on the scan . How long did your biopsy take to come back ?and if it was anything bad do u think they would have contacted me by now ? It’s been 4 days x

[Sez73 in reply to lizalily]

Sorry love, I didn’t realise it wasn’t a lump. Although my lump did show up as a dark spot on the ultrasound scan which worried me too, I also had 2 cysts besides the fibroadenoma (that’s a benign tumour and not cancerous) which also that a spot/shadow appearance on a scan. My GP called me within a few days to say nothing there to worry about but that’s when I was still in Oz and I’m not sure the processes are so quick here, I have to pay privately in Oz as there is no free NHS so u tend to get far quicker turnarounds from labs and GPs, having said that I do think they are quick to get back to if there is a real problem. You’ll hopefully hear soon, I don’t have a crystal ball to say everything will be fine but I do know these benign tumours like I had and the breast cysts are a lot more common than I had thought but I know it’s v hard not to worry. Hope everything is ok once you get the results which I’m sure will be all ok: hang on in there x x

[lizalily in reply to Sez73]

Aw

H thanks so much your so kind . I’m in a rite state to be honest it’s all getting to much for me . Every time my phone rings I’m jumping out my skin it’s horrendous this waiting time it’s really hard x

[vonie]

Hi Gwen I have stage 4 endo and like you had hysterectomy and also both ovaries removed. I still have endo on my bowel and bladder and various other places. Reason for the hysterectomy is to prevent any more emometrial tissue being produced and also as you dont produce estrogen it slows the growth of any remaining endometriosis. Also remember that endometriosis causes scarring and the scar tissue can also cause pain. I live with severe chronic pain. I would suggest asking for a referral to an endometriosis clinic, remember you have the right to ask for that even if its far away, as long as your resident in the UK you can be referred anywhere in its borders. My best advice is listen to your body, if you think there is something wrong insist its checked, to many of us have and quietly listened while being told there is nothing wrong and by the time we are diagnosed its too late to do anything. My thoughts are with you as they are with everyone who suffers from this disease xxx

[Gwen172 in reply to vonie]

Hi vonie, thank you so much for replying. Thought it was only me!! Can I ask where you put on hrt after hysterectomy. I was and not sure if that doesn’t help the endometriosis. I have only just discovered that endo could be the reason for chronic pain. I was told you will never have another day off work!! Well guess what I had to resign from my job at 40 because I was in so much pain. Do the drs know enough about this??? Sick of being fobbed off and feel like I am making a fuss about nothing. Last week was really bad. Horrendous period like pains! Yes I will make sure I will see endometriosis specialist. Don’t care how far away. Thank you once more. Xx

[vonie in reply to Gwen172]

Hi Gwen I am 42 yrs old and left work via an ambulance 4 yrs ago and nearly died because of a urine infection caused by endo. That is how I was finally diagnosed with it after years of being fobbed off. I take tramadol and gabapentin at there max dose daily and that helps a bit but I am still in severe chronic pain and so I also get onycodone, co-codamol and naproxen as needed. I have not had a pain free day in at least a decade but at least now people dont look at me like its all in my head. The only way to see endo is an MRI, no other test will show it after hysterectomy and ovary removal. If you still have ovaries cysts may show via ultrasound. I choose not to take HRT because they give a small amout of oestrogen which feeds endo. I have considered taking it recently because not having uestrogen also affects the body, I look so much older and have gained a lot of weight, there are higher risks of bowel diseases and many other things. Try learing as much as you can online about HRT benefits and also effects of not having oestrogen and make the best choice you can. This is my best understanding of how endo works-There are different stages of endo, early stages can be removed but as you had a hysterectomy Im assuming like me you were one of the later stages. That means potentially endo will have left the womb and spread to places like your bowel and bladder. Its important to know if its on your bladder because it make you very susceptible to infectons and can be painful when passing urine. If its on your bowel it causes severe pain not just when going to the loo but also as waste moves through your colon. When endo comes out the womb it can attatch itself almost anywhere and tries to feed via your blood stream and uses oestrogen to grow. Removing your womb and ovaries means that the source of oestrogen is gone and so it significantly slows any growth but its important to know that if your endo was bad enough to need hysterectomy then it was probably already outside your womb, it didn't come back it was never gone, what was left just needed time to grow and spread. I'm sorry to be so blunt but its better to know what your dealing with. Many doctors think of endo as a nothing disease and have little or no knowledge of how it works, you need to see a specialist. I am now disabled because of endo. I can barely walk because of pelvic pain and damage to my coccyx, the endo on my bowel not only causes pain but also nausea and sickness so I often need anti sickness drugs, the endo on my bladder has left me almost totaly incontinent. The drugs I take have there own side affects but without them I couldnt get by a day. When i am realy bad pain makes my heart beat so fast its dangerous. This is not a nothing disease, dont let them fobb you off, stand your ground with your GP and get a referral to your nearest endo clinic. Your doctor needs a reason to say no and as you have already been diagnosed with it they cant, you just need to insist, google endo clinics near you. I wish I had been better informed early on, maybe I could have got treatment before I got this bad but by the time I was diagnosed it was already to far gone. I was quite shy and listened to my docs thinking they knew best because afterall they went to medical school. Before I collapsed at work and was finally diagnoses my husband actually came right out and called me a hypochondriac because I kept saying how much pain I was in and docs had sent me for xrays and came back ok, I knew there was something wrong and just wish I could go back and insist on being seen. This is a lonely disease, I see friends and family posting things on facebook about their lives and I am so bad people have stopped even inviting me out. This disease will bring you down if you let it, remember you are not alone, there is a reason you feel the way you do, I hope you can get help but even if there isn't anything more they can do at least you will know its not all in head! I wish you the very best and If you to chat just message me xxx

[Gwen172 in reply to vonie]

Thank you so much. You have been so kind to share your past. I suppose when I had hysterectomy 24 years ago they didn’t know much about endometriosis then. I was told it would be a cure to have everything removed. I remember clearly going for 6 monthly check up after surgery and I knew then something was wrong. I have been referred to several different surgeons thinking it was a back problem but not having any diagnosis. As I said I have only just realised that endo could still be there. Thank god for google. I think I am still in shock. You do start to question your sanity. Dr says it most probably is endometriosis and only way to find out is laporoscopy. Which will lead to more adhesions and scar tissue. For now I will stay as I am. I am on pregabalin and dihydrocodeine and amitrytyline. Most days I have pain which I can control though also have episodes which go off the scale. Think yours is worse than mine. My bladder and bowel seem to be ok. I don’t understand why the drs I have seen have never mentioned the possibility that there is Endo still remaining. I do feel let down. I have a new gp now and she is willing to help so at least I have someone to turn to. As you said it is quite a isolating disease. I never like to plan anything as don’t know how I will be. That’s just the way it is. Think my husband at times doesn’t get it either!! Think he thinks I exaggerate. I am now 56. Had years of this. I will do my research and if the disease gets out of control will see endo specialist. Was offered pain clinic but nothing in our area. Have been there so feel am going round in circles. Thanks once again. Keep in touch if it’s only to have a moan. Think it does you good to share your problems. Xx

[vonie in reply to Gwen172]

Hi Gwen I was was sent for Xray because of pain in my back which in the end was endo. Like you planning things isn't easy but I find if I try to have an easy day the day before it helps. Accepting my limitations is the hardest part, used to be so active. Ask you doc for something to use on an as needed basis for when its really bad, I use zoplicone which is a strong sleeping tablet, when im that bad I can't get up anyway and I would rather sleep than be in tears. I find some docs are good and others don't have a clue so I can't imagine what ity was like when you had your hysterectomy done. Your back might be osteoarthitis, I have that, was put on decapeptryl for years to stop me menstrating but side effect is it causes that though I have spoke to a few people with it that have endo and all been told different reasons. Hope today is kind to you xxx

[Whirlygig44 in reply to Gwen172]

Hi Gwen, seen your post from 2 mths ago & am sorry you had such a run around with this disease. I am 55 last week I had results of my MRI they found my left ovary is stuck to the sigmoid colon. I have an Endometrioma also - a cyctocele prolapse & suffer with PCOS (endocrine disorder) The Endo is a new diagnosis & I can’t believe it has never been picked up!!

My Gynae has refused to give me a hysterectomy, saying the fact that the colon is affected means it’s too risky ( she said I would need a bowel

re-section. I have severe back pain, no pain in pelvis.

I’m wondering whether I should ask my GP to refer me to a proper Endo Clinic for second opinion, your thoughts would be welcome 😊

[Tcrosby]

Hi Gwen , I had my hysterectomy when I was 28 and my ovaries removed when I was 30. I am 48 now. I was rushed into hospital in July with suspected appendicitis, I had a CT scan which came back clear. The consultant came to see me the next day and said I was fine, he said I could go home but on my discharge letter it said I have endometriosis, I was shocked. I have an appt with the gynae consultant tomorrow to see what is going on.

[Gwen172 in reply to Tcrosby]

Hi, I never realised that it was possible to have endometriosis return after total hysterectomy. I have had constant pain for 24 years after it. I thought it was my back but last week I finally realised that I still have it. You never get rid of it. Are you on hrt? Don’t think that does any good. Hope you get some answers.

[Tcrosby]

I'm not on HRT, I was on the implant but the hospital stopped it. Then i went onto normal HRT but that caused me problems. I feel as though I have been pushed from pillar to post. Hopefully I will get answers today, I will let you know later how I get on.

[Gwen172]

Yes I feel the same. No-one has ever said that it could be endometriosis that is causing my pains. I have seen several specialists. I feel very let down. It is only the fact that I had really bad period pains last week that I thought OMG I can’t be! Googled it and finally realised. Saw my gp and she confirmed it. Don’t really want to have laporoscopy as more scar tissue though I will if it’s horrendous. Tired of feeling so crap. And tired of feeling tired!! Does endo show up on scans and mri’s. Not sure the gps know enough about it. Next time I would certainly do my research and see an endo specialist wherever they are. Good luck and please let me know. At least I now know that there is someone like me and don’t feel so isolated.

[Tcrosby]

I have just come back and I may as well bashed my head against a wall. He asked me why I was referred to him so I explained it to him. He said the doctor only wrote it on my discharge letter because of my history, I had no examination, he said he will not do a laparoscopy as it will only cause more adhesions so he put me on Gabapentin for 3 months. I can't understand why because I don't know what is causing the pain. If he thinks a tablet is going to work all well and good but I want to know what is causing it.

[Gwen172]

Oh how frustrating. They just don’t get it do they? I have been on gabapentin in the past. It might help. I am on lyrica now. It’s for nerve endings. I get sciatica like pain permanently. So glad I found this group. Problem shared and all that. Don’t think you ever get rid of endo do you? It is so debilitating. You would think in this day and age something or someone would be able to help. Take care. X

[Tcrosby]

Thank you, I am going to wait until I get my clinic letter and I will be going to my GP so he can send me to the right consultant to help find out what is causing this pain, I hate taking medication at the best of times xxx

[Gwen172]

Good. Please let me know how you get on and whether you will get to see endometriosis specialist. It shouldn’t be a battle as you have been diagnosed with endometriosis so they will follow that up. Good luck. X

[Hidden]

Hello all.

Interesting reading, and yes it is helpful to know you are not alone.

I have had 3 breast lumps removed, same place each time. The first was when I was 19/20, the last was 20 years since the 2nd. I think I was told they were fibro adenoma, or benign cysts. Not cancer is the best description as it is worrying. Over the last 5 years I have developed the same type of lump, at least it feels the same to me, on my lower spine and just below the bikini line. Each time I have shared my concerns I have been told not to worry. When I question why Doctors were so quick to cut my breast but not other parts of my body they say it is because of the location - no reason to my mind. So I keep checking them and when they get worse I will challenge my GP. Endo has never been mentioned. I have suffered water infections all my life and wonder if this is connected.....

I had a total hysterectomy in April 2018. This was because of years of increasingly worse periods and significant pain lower right abdomen? Where I think my ovary was. I was worried about cancer. I had healthy internal scans. A couple of polyps removed. I hadn't heard of Endometriosis until the surgeon told me he had found a lot of it, but he hoped he had removed it. The worst part of recovery from the total hysterectomy that no one told me about was the pain having a poo (initial weeks) the intense hot flushes, horrible vaginal smell and how long the belly button takes to heal - yuk! Passed all that now and slowly I have returned to work and trying to get back to 'normal' without doing 'too much'. (And I still haven't managed to have intercourse, and am beginning to wonder if I ever will. Thankfully an understanding husband.)

However, the lower right pain is getting worse. I am convinced it is bowel related, but also wondered if it was my hip. I haven't gone on HRT because I of reading posts on this website. I think it can only by the Endo, and am convinced of that from reading posts on this website. Also getting worse is my self doubt, tiredness and that hopeless feeling. Something that was bad before my hysterectomy.

I have started trying the diet for blood type in the hope that it might improve matters all round. A tip from the diet is having a little something to eat about half an hour before bed. This is to help with sugar dips in the night that can worsen hot flushes. When I have a little yoghurt of cottage cheese, it does seem to be helping.

Increasingly though it is the pain that wakens me.

I have read on this site tonight a post about Herbal Secrets 'vitex fruit' helping others with Endo systems. I think they had bought on Amazon, so I might try that.

healthunlocked.com/endometr...

Has anyone been to an Endo specialist? What will they / can they do? Or do they just give you more advice and pain drugs? I particularly liked morphine whilst in hospital, but I would never get to work on it! shame ....

I asked my GP to refer me when I went about the pain, but all she and other doctors say is, "it's early days yet, just take your time and see what happens" great stuff!

Keep smiling and plugging on all x