hi everyone, i had a total hysterectomy in june 2010 due to endometriosis. i was put on climavil hrt patches after which caused headaches and pains and i was then changed to livial approx a year ago but for the last 2 to 3 months i have started to experience the abdom pains, back pains, leg aches, exhaustion, joint pains and bloating etc that i had before my hysterectomy. its not as bad but its still bad enough to cause problems to my everyday life and routine especially with my 4 year old daughter here. please could anyone recommend any other hrt or treatment for hysterectomy after endometriosis? i am now taking my cocodamol and voltoral tablets for the pain that i was on before my op!! thanks, nina.(aged 26, west sussex) 
Hi Neene,
I am sorry to hear that you have been experiencing abdo pains again since your hysterectomy. I might not be much help here as I was looking for info about people who have taken the HRT patches and can give me a more informed choice of whether to take these or not.
I had a total hysterectomy a year ago today and have absolutely nothing left at the tender age of 36, my heart goes out to you at 26. Anyway I wasn't given anything to start with as I wanted my body to settle down itself without anymore drugs. My gyne doc said I could only take a combined HRT due to the potential of the endo coming back, which is why I am surprised your suffering with pains etc when your already on it.
I have been taking Clonidine, which is a non hormonal drug (GP prescribed) to help with the headaches and symptoms of menopause, this has helped a great deal, however this is where it gets tricky for me.
3 different docs have recommended 3 different treatment plans, don't take HRT, do take HRT, and its my decision to make, very helpful I hear you say!!! I have now asked to be referred to see a hormone expert who can advise me as its their speciality, perhaps it might be a good idea if you see one too. I really do empathise with you, its absolutely rotton and nobody understands. Good Luck.
Hi,
I was diagnosed with endemetriosis and polycystic ovaries when I was 21. After several ops I had a hysterectomy when I was 26, that was nearly 12yrs ago.
I was put on climavil 1mg for a few years but I was still getting hot sweats etc so i was put on ellestte 2mg which have helped. I have had severe pains in my legs since I was 15 which has baffled doctors, I have been told that they think its linked to the endemetriosis, I still get the pains even now which I dont understand why.
I too still get pains in my stomach but have been told by my GP that its impossible to get endemetriosis after a total hysterectomy however I have read otherwise.
My GP gave me Amptryptiline (cant spell it) 10mg which I take at night to stop the leg pains which do work at night, I cant take in the day as it makes me . I have given up on trying to find out why Im in pain as I get told different things.
Hi Halla 95,
My heart goes out to you too, 26 is NO age for a hysterectomy!! Now you have said something interesting there about your GP telling you you can't get endo after a hysterectomy, when my Gyne Consultant and my GP have said you can (about the only thing they agreed on) and it can be ANYWAY in the body!! As I am fiercely resisting ANY HRT, my GP yestie said it was better to get endo, then have heart problems as I am not on HRT and could potentially damage my heart and bones!!
Sometimes (and I mean somethimes) I wish I had my offending body parts back to I wouldn't have to go through this rubbish, I am a nervous hormonal wreck, anyway lets see what the hormone Doctor has to offer me when I see them.
All the best and keep similing. x
Hi
I had a complete hysterectomy around 5 years ago and have just started having pelvic pain, right side flank pain, lower back pain, and some menstrual like pain. The pain moves around from time to time and is dull and aching. I had estrogen replacement for a while after the surgery, then my dr. made me go off of it due to the heart damaging possibility. Then hot flashing ruled my life. I stumbled on this herb called Macofem and it saved me from a life of hot flashing. I take two pills in the morning and two at night. I went to my primary and after an exam and urine culture that came out good, sent me to ER to rule out appendicitis as at the time the pain was in rt. side pelvic area around to the back. Felt bloated also, even though I urinated and pooed easy enough. The CT scan came back clean, though it showed a kidney stone in the rt. kidney. They said if not descending, should not have pain, I had endometrioysis, ecfopic preg., before the hysterectomy and after reading this am wondering if is endo coming back. The pain is not in my head, I feel bloated (like constipated) yet I go #2 fine, with lower back and pelvic pain with some sporatic menstrual cramping. Anyone going through these same symptoms.
Hey lindasnds, when I had my op I was told by my Gyne specialist that there could be a possibility of endo coming back, especially if you have taken HRT. As you know HRT replaces hormones our body naturally produces. This then means that the HRT tablets continue to provide the body whatever it is, which causes the endo. I personally haven't taken any HRT and fingers crossed I haven't had any pain, but yes endo can come back. Don't be brushed off and I hope you feel better soon. X
Hey lindasnds, when I had my op I was told by my Gyne specialist that there could be a possibility of endo coming back, especially if you have taken HRT. As you know HRT replaces hormones our body naturally produces. This then means that the HRT tablets continue to provide the body whatever it is, which causes the endo. I personally haven't taken any HRT and fingers crossed I haven't had any pain, but yes endo can come back. Don't be brushed off and I hope you feel better soon. X
Hi l had total hyster 4 years ago and was given dual hrt to prevent endo coming back plus to protect bones... Yesterday whilst seeing my endocrinologist l was told I needn't of took the nasty dual hrt fir any longer than 6 months!!!!!!! So he's changed it to estrogen only any one else?
I had endo and ovarian problems and had a complete hysterectomy 6 months ago. I started having pain again after 2 months. The doc thought I had scar tissue so did a lap surgery to remove. It was not scar tissue but new and active endo in my pelvis. So it can return even after complete hysto. I had started taking lowest dose estrogen but only for about 4 weeks before surgery and the pain began before that. My doc explained that fat cells can continue to produce estrogen without ovaries. It is not very common to have endo reoccur after complete hysto but it is possible. I'm going to doc tomorrow to discuss treatment options for the endo. It is very frustrating to have all the pain return.
You need a dual hrt to minimise the chance of it coming back.
Have you discovered what was causing your pain? I have identical symptoms. I have had a colonoscopy, endonoscopy. And a CT. I have not gotten any closer to finding the cause.
Have you discovered what was causing your pain? I have identical symptoms. I have had a colonoscopy, endonoscopy. And a CT. I have not gotten any closer to finding the cause.
sorry to hear about your pain but it sounds like everything i am going throug. i had 3 ectopic pregnancies of which two times my tube burst. i would find myself in onsets of pain like my tube had burst again however i was nt pregnant. after all ectopics being surgically removed and another lap surgery to try to find the cause and all types of test searching for the problem and endo they came back with nothing and now 7 yrs later i had a complete hysterectomy and was told after they removed my uterus they found endo attacking the back wall. my doctor then said that it was a good thing that i had the hysterectomy because they wouldve never found it if i didnt...of course because i rellay didnt want a hysterectomy at the age of 34....5 months later i am experiencing horrible hot flashes, ab pains,my legs are really painful trying to walk and climb stairs, and my stomach is so bloated i look 6 months pregnant. i can sit on the couch for a few hours and get up with swollen feet and legs....i am always in pain and uncomfortable and alot of times emotional and crying and just recently went back to visit my doctor who changed my meds to premarin 1.25 and it doesnt seem to help either and also referred to to do pelvic floor therapy and now reading this i am wondering if it is worth the try or is it endo just coming back and i need to see the surgeon again...
Hi Neene.
I too have had a hysteretomy after finding endo. I was 20 when my procedure was done. I am now 24. I recently started having the same pelvic pain, back pain, exhaution, bloating, etc. This causes problems in my life, work, kids, love and such. I have gone to many doctors and noone can find whats causing pain. I have not taken any meds since my surgry at all, I found the hormones they wanted me to take make my symtoms worse.
I recentyly had another exploratory done to see if maybe endo was back or if the scar tissue was the culprit. I just recieved my results today, and the doctor said he found nothing wrong. evrything looks good. I am at a loss and loosing hope that ill ever figure out what is wrong. I just want to be a normal 24yo girl. If anyone comes up with anything please let us all know, I am at a loss.
And thankyou for your posts, its good to know im not alone in my struggle.
Omg doing a hysterectomy on someone as young? That's awful!
Hi sille16, I hear what you are saying! I have been through much of the same and it is so frustrating when the docs tell you 'everything looks good, so everything must be good'- when it's not! I have read several articles about many docs thinking endo may be an autoimmune disorder- which puts it in a whole new light and may explain some of the 'not finding anything' mantra that we seem to hear over and over and yet we know it's not in our heads. For many autoimmune disorders it's more a diagnosis of ruling everything else out... and then treating the symptoms, etc. Try searching endo-autoimmune disorder and see what you can find. I've read about these docs but have not found any in my area yet. Does anyone else have any further info on this angle? Thanks and hang in there- there has to be something that will give us some relief....
I am sorry to hear what you are going through i believe that the most of us have most of the same issues..i went thru it for 9 1/2 yrs of the pain and no answers so my doctors came to the conclusion that it must b my female orgins they put me a s**t to put me in menopause to c how my pain would be everything did slow drastically so they decide that the best option for me was a hysterectomy and during my procedure they found endo attacking the back lining of my uterus which would have not been found if they hadnt removed it...my issue is that now i am beginning to have pains again..so now they suggested pelvic floor therapy...I HOPE IT WORKS
Hi Neene,
I too suffer from endometriosis and I understand your pain; but I haven't had a hysterectomy; which I thought was the only solution to solving this never ending suffering. I am so sorry you are still suffering. I am not 100% sure what else may be of help to your situation; but perhaps through conducting your own experiments; (this is what I am currently doing, to help heal myself) I do believe that what you eat and how you live (stressful, complicated, over busy) does have some affect on our bodies. I am currently vegetarian and going to try fully raw as I was still eatting processed foods, which has many harmful additives to it, not to mention the additional hormones found in poultry, diary and meat products which is a good enough reason to become a vegetarian. I am hoping going fully raw will help me to recover as nothing else has worked for me. I really do not think the doctors know any more than we do, which is almost nothing and that is why there is so much trial and error with everything that they do at the moment. Some doctors say taking hormone supplements alieve the pain but others say that is only like putting a band aid on a cut and not a solution. All we can do is to try and carry out our own experiments because we know our bodies the best and we know what we put into it and how we live, the doctors only see a tiny piece of the puzzle; perhaps we can all help each other to finding a better solution than taking drugs, and surgery. I really am sorry you have had to have a hysterectomy and I send healing thoughts to you and everyone else suffering from pain from endo. Thank you for sharing!
Have Endometriosis since 19....discovered after pregnancy was eptopic. WARNING to young women choosing to exercise "rights" (read between lines) those clinics tell u pregnant urine test no ultra sound........imagine 12 wks eptopic with endometerosis with procedure.........
If you have painful peperiods that are heavy cloty you probably have endo...sis ! Simple like that! Further if u have a lot of ovulation mucus with you go ti gyn thinking (he cheated it got to be std so much ov mucus clear) you have bad endo ...sis...
I've lived with Endometriosis since 1987! IIts 2014. The medical industry JUST now started studies on endo..sis....
I've lost half of body s blood into ab cavity at 19 yrs old from chocolate cyst. They had laparoscopy back then...open me closed right back up had a room full of doctors who wondered how u was alive said looked like a bomb went OFF inside....could not tell organs apart too much blood...around lungs could not breath! Lost semester college in Hospital
Total 8 surgeries 3 or 4 life threatenubg
Have Endometriosis since 19....discovered after pregnancy was eptopic. WARNING to young women choosing to exercise "rights" (read between lines) those clinics tell u pregnant urine test no ultra sound........imagine 12 wks eptopic with endometerosis with procedure.........
If you have painful peperiods that are heavy cloty you probably have endo...sis ! Simple like that! Further if u have a lot of ovulation mucus with you go ti gyn thinking (he cheated it got to be std so much ov mucus clear) you have bad endo ...sis...
I've lived with Endometriosis since 1987! IIts 2014. The medical industry JUST now started studies on endo..sis....
I've lost half of body s blood into ab cavity at 19 yrs old from chocolate cyst. They had laparoscopy back then...open me closed right back up had a room full of doctors who wondered how u was alive said looked like a bomb went OFF inside....could not tell organs apart too much blood...around lungs could not breath! Lost semester college in Hospital
Total 8 surgeries 3 or 4 life threateded total hysterectomy divinch surgery 2008....organs glued to pelvic bone.....my Body has.been freaking out Drs since 1987! The mess this endo makes ! No children
I believe endometriosis is a AUTO IMMUNE DISEASE...since all out total hysterectomy 2008 and was 13.hrs divinch surgery...i have basically acquired MIXED DISCONECTIVE TISSUE DISEASE ...LUPUS INFLAMMATORY RHEUMATOID ARTHRITIS....BURSITIS....STROGENS ...THREE LOOPS OF DIVERTICULITUS AT SAME TIME OH VERY IMPORTANT THEY SAW DIVER...WHEN INSIDE SURGERY BUT WITH WORST AND FLARE UP 3yrs after last surgery loop s WHERE HIDDEN FOR ONE YEAR SCAN AFTET SCAN NI SHOW DIVERTICULITIS WBC 3000 for past 6months doubled over UNTIL FINALLY THE LOOPS OF DIVERTICULITIS GOT SO BIG THEY RIPPED SCAR TISSUE ALLOWING SCANS TO SHOW PROBLEM.....HAT WAS SOOO MUCH FUN .....BASICALLY THEY SEE MY MUSCLES RIPPING FROM STROGENS MMY GLUTUS MAX MUSCLES RIPPED IN HALF....ALL SINCE MY LAST SURGERY WHICH WAS 13 hours to remove all in hysterectomy with server endometriosis OH forgot to mention 1 tumor in neck rigjt aftet surgery that grew to INNUMERABLE TUMORS HEAD BRAIN TO FEET.......PET SCANS ON GOING BIOPS CANCER SCARES.. YEAH I'M COMPLETELY IN 1000 percent pain every single day of my life.
There are no words....MY DOCTORS LITERALLY TELL ME THEY DON'T KNOW.HOW TO TREAT ME
THERE ARE MANY CONNECTICUT
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