Constant pain AFTER full hysterectomy & also removal of overies.

[Jillanovitch]

Hi ladies, I thought I was going crazy until I read some of these stories, I had a full hysterectomy at 39, I was told after surgery that I was all stuck together, the consultant removed my cervix but left my ovaries.he also informed me that I had severe "Lesions & Adhesions" caused by endometriosis. Two year later severe pain, I had chocolate cysts on my ovaries, they were removed & consultant said he washed my remaining organs in saline. I was on HRT up until January this year, by Febuary I was In Agony, bloating, constantly going to the toilet to trickle, my bladder constantly feels full, I have abdominal pain quite severely, hip, back & leg pain. I am always exhausted all the same symptoms on here!! My dr doubts it's endometriosis as I'm not having eastrogen anymore. She has however booked me in for a scan which could take 2-4 weeks. Cannot believe after researching this that this disease is now not better dealt with, and were all left feeling dramatic!! I do believe that not everyone needs a hysterectomy, I believe the endo should be investigated properly & thoroughly removed to save multiple surgeries & ongoing problems!! You are not alone and your not crazy. Hopefully there will be a cure found & soon!!! I read somewhere that endo was diagnosed in 1927!!!!! I am 46 now & want this pain gone, it's been with me since my 20's!!! I have had 5 weeks off work so far & have just been given another note for 3 weeks, fed up!!!

[SL72]

Hi

So sorry to hear that you are having such a rough time

I too am in a similar situation; had a total abdominal hysterectomy 8 and a half months ago (at 39). My insides were all stuck but were showing signs of becoming pre cancerous...so this alone was enough for me to go ahead with the surgery. Following the surgery I had complications and was rushed back into hospital. After 6 months off I returned to work on a phased return but am now working my full time hours and more. I am experiencing terrible pelvic, groin, hip and lower back pain and pain down my legs....like I used to. I spend my days off mainly in bed trying to catch up with myself...I feel totally exhausted.

I did know that endo could come back....especially as I am on estrogen based HRT. But some foods also encourage your body to produce estrogen....am looking into this to see what they are....and if any endo was missed diring the op then that can continue to spread. My pain could also just be scar tissue....or internal healing......but I'm monitoring my pain and then will go back to my GP.

Endo is horrible....we do not deserve to suffer like this and I totally agree that more needs to be done to find a better way of managing/controlling/removing or curing it.

I wish you all the best and hope things improve for you real soon x

[tinker241]

what i have heard if people who have severe endo... have hysterectomy and the endo will come back but it best to have the endo all cleared out first before having the hysterectomy... but some people are lucky to have painfree if they are minor endo... they can get cleared and have it done but to me i am minor/moderate endo... i am afraid to have it done and dont want it done and i am on depo-provera injection which giving painfree at the moment but still having bowel problems for years ago... have diarrhoea all the time and stomach cramps.... i know it the food intolerance and anxiety and stressed as well and it make it have an attack now i know what that is which is IBS-Post Infectious which is not very nice at all... left me weak and so tired.... so i do hope they can help you to be painfree have your scan... x

[Tiestotricia in reply to tinker241]

I would strongly suggest getting tested for C-diff. It is also very contagious

[Tiestotricia in reply to tinker241]

Sorry I accidentally hit reply. But post cancer patients as well as people who have taken a lot of antibiotics over their life contract this period or it can be contracted through unclean conditions but with everything you are saying I have the same problem is a drug you can take One of them is $5000 the other 1 diphenethyloxelate is cheaper. To chronic diarrhea is just one of the horrible things I had to go through. When I had my surgery I had cervical cancer sounds I had bladder prolapse in anal cyst rectocele and bladder skiing. I came here because I am having exclusion eating pain but saw your post and hope that what I said can help.

[Juleyanne]

I read an article this week in The Mail 'Health' section (Tues March 12th) saying something which was the opporsite of what I had heard before. It said - Three servings a day of dairy foods such as cheese or milk could lower the risk of endometriosis! They said researchers at Boston's brigham and Womans Hospital in the US analysed the diet and disease rates of 70,000 women and found those who had three portions daily of full or low fat milk, cheese or butter or yoghurt had an 18 per cent lower risk of developing endometriosis. It is thought nutrients such as magnesium in milk act as anti inflammatories which may prevent womb tissue becoming inflamed and migrating!

Me: Well I had heard that it made it worse and anyway being veggie I do eat cheese but do not like the ethics of the dairy industry where a calf is sent for veal whilst we humans take it's milk, so that makes me a little uncomfortable. I had heard milk was bad for endo and soya or rice or even almond milk was better. I just use a vegetable low fat whitener in my coffee. I know cheese is milk but I have the odd bit for protein and bone density especially as I previously had Zoladex injections which sap your bones when it puts you into pseudo menopause. Oh, it is so confusing!

[Jillanovitch]

Hi SL72 and tinker, many thanks for your replies. To be honest I was very ignorant to all these endo facts until I researched it myself. My Dr told me she doubts it's endo as I'm going through the change & have no eastrogen. I've just read that HRT can shrink it slightly but not make it disappear. I came off my HRT and immediately got the above symptoms. Apparently there is medication, I.e back on HRT or surgery & hopefully the surgeon will remove it all. I have had two surgeries & would prefer another but only if my surgeon can find & remove all the endo, otherwise what's the point? HRT is no longer an option as the time you can take this runs out eventually. I am off work, worrying about my job does anyone know if working will prolong the pain or make it worse?? I may wait till after my scan, hopefully that will pick something up. It is good to know we aren't alone with these painful days & it's good to know what it is!! Tinker I'd ask your surgeon if there was any chance of removing the endo & not your organs!! If only I knew then what I know now! Good look ladies, thinking about you both xx

[Juleyanne]

I also mean't to say that foods that are anti inflammatory are good as said above. Taking a omega 3 fish oil capsule is good for anti inflammatory properties or things like mackerel or other oily fish.

I do eat fish so I suppose I am pescatarian rather than veggie, just not red or white meat. Taking a probiotic can sometimes help too and primrose oil or starflower is supposed to be good for

IBS type symptoms which often accompany this condition. Although an endo specialist gyne who gave a talk indicated that IBS did not exist! it was a lazy diagnosis by Gps of an underlying gyne condition! Again all very confusing. Believe me, I have tried leaving foods out, adding them later.

Cutting alcohol down, eating more fibre etc etc and there seems to be no rhyme or reason that connects with what I eat or drink, it seems to have a mind of it's own and fluctuates in pain levels whatever I do.

[Jillanovitch]

I have been on a low fat diet for 3 months, I personally believe that diet makes no difference at all, it's internal organ pain. I excersize daily & eat really well. I have not seen any difference at all. I think the answer is remove a section of our midrif to the tops of our thighs, that as far as I can see is the only answer!!! Depressing huh? Awww good luck and if anything you find does work please pass on!! Thanks Julyanne x

[Lizzie71]

I was 100% sticking to Slimming World. This restricts your milk intake. I have never felt so weak in the 5 weeks I stuck to it and my pain this month has been worse than it has in a long time. Not sure if it means anything but I feel dreadful. Who knows.

I agree tho. 1927 and still no answers or gps etc that seem to give the right care. I had a hysterectomy in "08" keeping ovaries. What was the point if am still suffering now?

[Hidden]

Some surgeons say that you can never get rid of Endo, even with a hysterectomy. Whilst I am sure that doesn't always apply, I do get cross with consultants who talk about recovery. Goodness, if Men had to be operated on 2-3 times and had to sacrifice the bits that make them feel like a man and still had pain can u imagine how much attention they would get? Sorry, I am ranting, food for thought though; would it take them as long to get diagnosed?! As for.food, I think a healthy approach is bound to help as opposed to diets which could depress u. Hang on in there, warm baths, hot water bottle and lots of love and kindness to urself xxx

[LittleMissManx Moderator]

Sympathies from me too Jilla and SL

Sadly I am another one not 'cured' by a hysterectomy. I am now 2 years plus post-hyst but like you have ongoing awful pelvic pain, leg pain and feel generally exhausted most of the time. Due to moving house I am now under a new gynae & hospital and had an exploratory.lap in Dec 2012 in his care to see what was going on. The lap showed endo on my left side and right sided ovarian remnant tissue. Obviously I was not overjoyed to hear this but on the other hand I had a definite reason as to why my pain was continuing. The surgeon excised the endo and tissue but the pain persists.

My gynae is at a loss as to what to do next and has said as much but in a nice, not dismissive, way. At my 8 week follow up appointment I asked to go back on prostap as I had had good results on it a few years earlier. He agreed it's worth trying and although it is early days I have had some pain free days. It is ironic though that I am having injections to put me in a menopausal state when I should be there anyway due to the hysterectomy.

I havent taken HRT at all as I wanted to minmise my risk of endo recurring. But despite making a conscious decision not to take it in any form the endo still made a return visit. Lucky me! I don't know what the answer is for any of us but having a big operation as a hysterectomy is does not mean an end to endo. If only it did

On the dairy/milk topic I have been told to actively increase my calcium intake to help minmise the risk of osteoporosis. So I do try to have a lot of milk, yoghurt, cheese etc as instructed by my GP.

And as whatisthis said many ladies have had numerous operations prior to the hysterectomy in an effort to beat endo. A lap may only be a classed as a day-case but it is still invasive surgery and that brings with it the risk of adhesions, infections and scar tissue forming.

Fingers crossed for a healthy 2013

Caroline, x

[sophiesicknote]

To all

It is very sad to read that you are still suffering....I think I am one of the lucky ones....although after many years of pain, self doubt, operations, etc

I had a total hysterectomy last summer, after years of aforementioned symptoms. (I could spend hours talking about many others and the failings of the NHS system but that's now in my past) I have had to reconcile not having a child..however, the pain and total disruption tomy life has COMPLETELY gone and I am me again..smiling laughing and apparently,to people who have known me only in the last 5 years, a different person. I'm not, am just living without pain and feeling normal.

I went to an amazing doc at Addenbrookes hospital who is an endo specialist and although has treated me over the years was really bound by NHS systems. I decided enough was enough and went privately to him...best decision ever...although if I had waited another 3 months I would have had the same op on NHS with him...but couldn't take any more.

My life has been transformed...and i want women to know that for all the unhappy stories there are also some, like mine, to give hope.

II also ate well, exercised, using homeopathic alternatives, range of pain meds and many types of ops over 15 years in all, nothing helped and just got progressively worse. For me this was the only solution.

I hope that for you all there is some solution to your pain and suffering in the near future.

Sophie

[faizak in reply to sophiesicknote]

can u please please tell us how ur pain gone,i had my hystrectomy done 3 months ago they removed my right ovary with cyst in it.im having severe back pain after little exertion,i have stairs in my house that made my pain worst,can u plz tel us if u took any vitamins,suppliment ANYTHING that helped ur pain gone?????

[Jillanovitch]

Hi ladies, thanks for your replies. I have a "scan" booked ut as we all know that may not show anything at all. Having the scan will ensure I see a Gyne hopefully. I know a larascoptomy is what the end result will be. In the meantime my bladder and stomach are still swollen, but I've been pain free since Sat night!! Some back ache still that I can cope with & still tired. ;0) Sophie really pleased with your news & very happy for you. I too have had a full hysterectomy, I just want the endo to be gone now. Lovely to hear from you all, such sad stories, how we cope god knows! Keep smiling I know I going to!! ;0)

[Mydeardeb]

I nearly fell on the floor reading this! I feel like I was reading my own bio.....I'm laying here, trying to figure out why I have this sharp pain in my right side! I hade a full hyst. On Oct 5th. Problem solved right? Wrong!!!! Here I am! My family doctor said it's a muscle, lol, I'm suppose to be in physical therapy right now. Not! My Gyno is in Mexico sucking on a bottle of tequila I'm sure, I'll wait for him. This has been endless. I'm 43 yrs old. This started with me at 17 yrs old. I'm tired. This pain goes to my shoulder too. My leg. All down my right side. There must be relief someday! I'm sorry to say, I'm glad I'm not alone nor crazy.

[Anna22]

Hello. Jillanovitch I hope you're doing better. I googled endo after hysterectomy because I'm having a bad day. I guess I had some hope there was a new cure but it doesn't look like it. I hate to be such a downer, but I've had a full hysterectomy and 4 additional excision surgeries 3 AFTER my full hysterectomy, and my pain is horrible. Yes, my endo is still growing actively. I'm seeing a pain specialist and the only option is narcotic pain meds. I'm grateful for them, but I'm so exhausted on fighting this fight. I try to work full time and I'm so very fortunate to have a daughter. She is my miracle baby as getting pregnant was not easy and the preganancy itself was very difficult. As I type this I'm feeling a little better. Although the pain is insane I've been able to still accomplish much. Some days are worse than others. The only thing left I feel I need to try is that I am trying is to get my weight down as fat is a source of estrogen. Yes, even after zero hormones after my full and complete hysterectomy endometriosis continues to find my body a perfect host. I do notice I feel better when I eat healthier but the better has nothing to do with the endo pain that is daily and constant. When I over do it my entire body becomes inflamed, similar to rheumotoid Arthritus and then I take steroids for a bit to calm things down. I guess you could say I've given up hope other than trying to get my weight down. The last surgeon I went to told me there were no other options for me in Nevada, USA. He is the best surgeon in our state for endo and uterine cancer. There are definitely things that help me function day to day, but there truly is not a cure for me. I pray daily my daughter does not get this.

I recently had my will done and I stressed the point of donating my body for endometriosis research. This may sound gross, but I frequently imagine a surgeon opening my insides up and locating every single adhesion and endo growth with surprise on how the endo cells have reproduced and grown in my body. My hope is that at least by donating my body to research the medical community will understand this disease more and not make ladies feel like they are crazy when they are suffering so much pain.

I have read and heard of success stories and truly hope you do not give up the fight. If and when I get my weight down and body fat down to a very low number and I feel better I will come back and post more. Until then please know that if you're still in pain after a hysterectomy you are not crazy and yes you may have adhesions or endo cells hiding out. My last surgeon told me I was crazy until I showed him pictures of my inplants AFTER my full hysterectomy. Then and only then was he willing to operate and yes, he found many more cells on my colon and other organs. When I asked him what next if the growths continued, he looked at me shocked as if I would ask him this, and he told me there was no other resource in my state to help me. That surgery happened in May of 2009. If you are hurting please know, you are not alone and you are not crazy! Endo is real, Endo is painful, and Endo can be very difficult to excise completely.

[caroljane80]

Hi If they left your ovaries in then you will still be producing estrogen. That's rubbish the doc said you wernt making any. Removing your uterus does not affect estrogen. Do you need the HRT is this maybe making it worse. I know it does with me if say I'm going into the injections 2 weeks before they kick in or when the are wearing off and I take the hrt. I know post is old but I hope this helps.

[SharonLong]

I so have the same problem, I am in constant pain in my left side. Feels like it is pulling my intestines.. And my Dr treats me like I am totally crazy. LOL. I am like dude I can't even bend over and touch my toes!!

Thank you for your post now I dont feel so crazy!!!