endometriosis after total hysterectomy :(

Hi I veeee1, I would love to talk with you regarding Endo. I'm now 51 of age and it has gotten worse. Looking forward

Hi I'm 53 and I had a total hysterectomy 12 years ago. For a few months now I've had pain in my lower abdomen. I've been treated for UTI's, and I still hurt. I mentioned to my Dr that it felt like endometriosis , but I asked how could that be since I've had a total hysterectomy . She said the legions can still grow. I was totally unaware of this!!!! Right now they're treating me for a collapsed bladder. I'm not going thru that because of all the controversy on Mesh implants. So stressed,,,,, I'm wondering if it is endo pain and I should go see my gynecologist . I never had all the hormone therapy you all speak of,,,, can someone explain what they do? Ty

Hi Patty

I am so sorry that you might be having endo "again". After my section of colon was removed at 54 for endo when all docs thought I had diverticulitis, I was told that it wouldn't have mattered whether I'd had HRT or not. This was a friend who handles medical research on a daily basis. She said that endo could manufacture the hormones it needed on its own. If that's true then we've all got little time bombs inside us, or some of us do. There are women who never have trouble again after babies or hysterectomies or long courses of hormone or birth control treatment.

I haven't seen a gynecologist in about 30 years. If there had been endo specialists back in the '80s, I'd have moved to be near one. So I'm not conversant in current methodologies.

Good afternoon,

I was recently told I might be experiencing endometriosis after a recent surgery of having one of my ovaries removed due to a cist that had burst and was leakin. Before the surgery I was treated for about 4 UTI's that I never had, the worse yeast infection I have ever had, was told I had a vaginal prolapse(didn't have) and finally the surgery. After the surgery the same exact pain returned but with more pain. It hurts to stand or walk for a distance. I'm a baker so lately no work can be done or suffer later. This has been going on for eight months now. 

Four years ago I had a partical hysterectomy, so now after the new surgery of four months ago, bladder meds because they said I was having bladder spasms my dr. is stating that I must have had endemetriosis all along, three days ago I was given the Depo shot to shut down my pelvic area and naproxen 500 for pain (doesn't work). The pain has gotten even worst and my doctor has said if this doesn't help a full hysterectomy will be needed to stop the pain, but now I'm reading that the pain doesn't stop. OMG, I'm scared with all of these different results, different pills with a never ending story. Someone please give me any advice...

Hi Nina

If there's any way you can change doctors, you may want to think about that. Your situation seems even worse than what many go through.

Neither endo nor the pain return in everyone. There is no complete answer on a lot of endo questions. Docs used to believe that bearing children absolutely ended endo, for example, but we women now know that's not always the case.

My pain did stop after my total hysterectomy, but not instantly. I was without any pain or problem for 25 yrs, which is pretty good. I've been pain free since the 2d surgery 8 yrs ago. Again, pretty good in my book. Someone else may have a different experience.

Try to get in to see an endo specialist.

Wow right after my particle histo I also had a lot of problems with my bladder but they said it was due to the fact my uterus was rapped around my bladder and they also told me it was just spasms and gave me pills and said it to would pass well its been a little over 2 years now and I walk around with the feeling like I always have to pee or when I do go to pee it take a while for the flow to start and most the time its just a dribble I'm always now getting utis azo (over the counter ) is now my best friend I've seen a urologist and that didn't seem to be any help just a lot out of pocket cost. The get up and go I once had has got up and got away.. I haven't gained or lost any since my surgery but don't see why or how because I don't have the energy to even get out of bed the pain comes and goes but is there more then it is gone the only reason I agreed to the surgery was because I was told I'd be pain free and that was well a big fat lie!!!

Thank you for your response. I also went through AZO, but they no longer sooth the pain. I also was on bladder pills, but it restricted my urine. I still have sleepless nights due to all night bathroom visits. All of my urine test has come back normal. I'm trying now to change Ins. Company...

Thank you for your response. I'm in the process of trying to change my insurance company...

Nina, good luck with the insurance switch.

To all of you with the night time bladder issues: Does it help if you stop consuming liquids 3 hours before you go to bed? I had to start that routine about 15 years ago. Now it's 4 or 5 hours but that's complicated because I have to take 2 rounds of meds 1 hour apart before bedtime. But it worked great for me for a long time. I'm in my early 60s now.

I imagine you're like me in that lying down increases the urge to go? Used to be that happened only if I lay upon my side. Now it's also when I lie down on my back. Argh!

Have you tried seeing a reputable Naturopathic doctor?  I have also suffered from endometriosis, and have found real relief from herbs and tinctures that were prescribed.  Sometimes when the allopathic doctors don't have solid answers or solutions, it is wise to seek alternative medicine.  Good luck, and I hope your condition greatly improves!

Hi 

I don't know if your still on here?? 

Its been a year since you wrote this, can you tell me how your getting on and if you've got any answers. 

The reason why I'm asking I had a total hysterectomy 15 years ago due to Endometriosis and cysts, been on tiberlone ever since. I'm getting a dragging sensation between my legs, so I don't know if it's a bladder prolspe or endo come back after 15 years if that's possible after that long.

iv been ok up to about 3 weeks ago.

thanks 

Hi Julie,

Yes I am still on here, and still suffering I get so tired of my gp not listening, I have been hospitalised for appendix for them to say it is not that and can't be gynae as there is nothing there. The scar tissue pain is excruciating and I feel like I am having periods. I am still on HRT and this is 16 years later, I have tried to come off but the hot flushes are awful.

I would definitely be persistent with your doctor to check that the bladder hasn't prolapsed as this can happen as a result of a hysterectomy but I would also be forceful about endometriosis returning and arm yourself with info as sometimes they are not as read up as we are.

Let me know how you get on Nikki xxx

My endo reared up 27 years after my total hysterectomy.

Thank you so much for replying Nikki.

i said to my GP  is it possible for endometriosis to back after 15 years and she said that if I hadn't had symptoms by now that I wouldn't get it back?? That's why I'm thinking its a bladder prolapse. 

Its a dull ache and fells like a burning sensation too. 

Crikes isn't there no end to what we have to deal with.

i feel for you, it's like banging our heads against a brick wall.

i now suffer from health Anxiety due to a medication I was on and having bad side effects thought I was having a heart attack, put me on beta blockers I was passing out, in the end though anxiety and exhaustion, I asked to be put on antidepressants that was Feb this year. They have helped get my life back, but now this. I'm going to make a doctors appointment tomorrow if I'm lucky I will get seen within the month,  if I can get past the receptionist. 

How old are you if you don't mind me asking? And what HRT are you on.

im 57 end of the month and on 2.5mg tiberlone combined hrt

Thanks

Hi Julie

You poor thing, I am 49 and I too have health anxiety, I take 40mg of citilopram. So I can absolutely sympathise with you. With regards the burning are sure you don't have a UTI, as it should t be burning.

I often get scar tissue pain too which catches me and cripples me with pain. I wish doctors would listen.

Where are you based x

Omg.

That blows what the gp told me then. 

Have or did you have anything done to help it.

can they do anything to control it. Was or are you on HRT?? 

Thank you for replying 

sorry for all the questions 

 

Hi Julie

You ask away.

The HRT is Evorel 50 and have to change them twice a week.

Xx

My pee isn't burning, I don't know how to describe the feeing really.

i suppose it's like a tingling/ dragging in my virgina.

i did think it may be a uti so iv been drinking cramberry juice but for some reason that was interfering with my antidepressant. I was getting anxiety again like I hadn't taken a tablet, So been drinking loads of water and barley water, but it's not helping. 

Im so fed up with not feeling right, 

iv put on weight with the A/Ds so that's not helping the cause. 

Im in Lincolnshire x

ps where are you x

Oh sweetheart I feel your pain, you really need to see the doctor especially as you have the dragging feeling down there. They cannot ignore how you are feeling as they cannot feel it, tell them everything. How down it is making you feel too. I have given up a bit with it all and get fed up of telling people as they I think oh no here she goes again moaning about another illness. But it really is not like that.

I am in Essex

That's just how I feel. 

My husband died 9 year ago of cancer aged 54 and he got fobbed off and then it was to late, I fear the same thing will happen to me. With not feeling 100%. 

Im very tearful tonight, i get so scared, 

will let you get to bed I don't want to keep you up.

speak soon Nikki. 

You take care x

Hi Julie

As Nikki said, ask away.

I had a total hysterectomy at 27 and went on Premarin, assuming that I was all through with endo. I took my premarin faithfully because I tried going off it once when the government allowed a generic form in. I knew the generic was trash within 2 months & started demanding brand name, took the government a year to pull the generic off the shelf & admit it was a dud.

All along I continued smoking cigarettes. When I was 50 my gp started hounding me to get off the hormones so we started cutting back my dose. By my 54th birthday in July, I was down to the smallest dose made and not taking it on a daily basis. I couldn't get off completely, couldn't stand the hot flashes.

I started having diarrhea and terrible abdominal pain. Saw my Gastro doc. He thought that I had diverticulitis. I didn't think so. Had had diverticulosis for decades but we only knew that because of the millions of colonoscopies I'd had, not because of any problem.

I kept having the diarrhea and started doing tests which all pointed to diverticulitis. One night I woke up passing a lot of blood rectally, exactly how endo presented itself as something more than heavy painful periods at 24. Terrible pain, couldn't stand up. Called ambulance & told the guys that if I didn't know it was impossible, I'd think my endo had returned. Ha!

Finally after my 4th terrible spell my Gastro said that MOST people had surgery after the 2d bad round of diverticulitis & why was i so willing to risk perfed intestine or colon.

Had the surgery & didn't wake up to any -ostomy bag, for which i was thankful. Swore I'd never have another abd. surgery. In January on a follow-up with my surgeon, he said that I had to read something. He handed me the pathologist's report on the removed section of colon. "Unremarkable but for endometriosis."

My surgeon & his partners had never heard of it coming back like that, nor had anyone else amongst all my docs. My gp said, "but you're not taking enough hormones for them to do anything. Impossible!"

But she was just talking med school pablum. It can come back. It doesn't do it to everyone but it does it to some. I read reports, back in '08 after that surgery so please don't ask for details, that say that if endo doesn't get the hormones it needs via the body or pills, it can manufacture them. That is truly terrifying.

We don't yet know what's causing your symptoms but we do know this: ESB! Endometriosis Strikes Back - sometimes. Personally, i hope it's something lesser causing your problems.

Thank you for replying aitarg 

iv been reading up on it, and like you said it can rear it ugly head.

Doctors don't know everything do they, but they probably try and keep things from us too, it cost money to be tested and with the NHS being in such financial mess. It's cheaper to give us medication.

sound like you've been through the mill, 

th

im so fed up with going to the doctors, Iv had a rough year and with health Anxiety though medication I was on causing horrendous side effects. 

Got all that sorted, and now the gp want to change my HRT, wish I had the guts to come off it completely. And also this. In away I'm hoping it's a bladder prolapse instead of Endometriosis.

you were very young bless you to have a total hysterectomy.

Thank you so much for replying, know doubt you will keep seeing me on here. 

I so pleased I joined this form, something are very helpful, but also very scary at what some have gone through.

speak soon x

Yes, Julie, I didn't want to cone right out and say, "hope it's just a prolapse bladder," but that was included in my wish that it would be something lesser.

I can't complain as I had 27 blessed symptom-free years between those 2 surgeries, and now I've had another symptom-free almost 9 years. I have actually been quite fortunate in that. I have a very oddly shaped & scarred abdomen since 1st surgery was a long wide bikini-cut and the last is an even longer mid-line vertical cut, but I'm in my 60s now an am accustomed to the appearance.

Our war stories are distressing and not exactly comforting for someone in your position. I wouldn't have shared mine beyond my 1st reply if you hadn't asked, and I debated whether to say anything at all. I decided that you needed to know that endo could come back.

Sometimes docs speak from ignorance and sometimes I suspect they speak from a wish or prayer for the best. I am blessed with a nature that n let's me accept the statement, "we didn't find anything," as a positive suggestion for my body to chill out, knowing that if there's something to be found it will happen later.

It wasn't always like that. In the 1st 9-10 yrs after hysterectomy I didn't believe much of anything said by docs. 3 yrs of trying to find out what was wrong when endo went so crazy, with docs telling me that the pain was in my head while giving me stronger pain meds ultimately cost me my reproductive organs. At least, that's how I thought then so I walked into every doc's office with a mile-high chip on my shoulder.

But I had never wanted kids and had gone to great lengths to avoid them. One day in the grocery store I walked past the tampon & pad aisle. I stopped & looked around. Lots of new packaging and some brands were gone. [Any Americans here who still recall Modesse?] I realized how much money I'd saved, and also how much worry -- will my period come early, why am I late, why does it hurt SO much, etc. After that I started to let the resentments go. It's silly that i had them in the 1st place since i was the one who pushed so long & hard to have that hysterectomy. Good thing i did, as it turned out as thungs had gotten so much worse after the lap.

Anyway, I think with the combo of the current physiological problem and the anxiety, it probably is best to stay on HRT for now. You might talk with your doc about tapering down your dose, tho I've no idea how old you are. Meantime think about going on the alternative treatments forum here and ask if acupuncture can help with hot flashes. I know it has helped me with many other things such as depression, numerous pains and spinal issues, but I don't know about hot flashes. In all candor, had not the endo come back, I'd still be doing that tiny bit of estrogen, assuming I had a doc who'd write the script for me in my 60s, lol.

You're in my prayers, Julie. It's okay to feel fear and anxiety. There's almost always someone stirring about on here, ready to listen & chat.

Aitarg

Hi aitarg.

tried to get a gps aptment to see a lady doctor, I won't see a male.

and carnt get me in for a least 2 weeks, so iv made an aptment for next friday to see a nurse, she hopefully can take a look, 

i also looked on line to self help prolapses and Iv got device coming. It's called a kegel8. My pelvic muscles are weak and I will try anything to tone them.

but if it is endo it won't hurt to tone down there anyway.

up until now having the hysterectomy was the best thing I could have done for myself, I had my children when I was 22 and 25 years old wasn't wanting anymore.

I don't really get hot flushes, HRT one every other day seems to help. But I'm thinking of coming off them, but need to have a word with my gp first.

well better go get some house work done.

take care aitarg speak soon x

 

I have many of the same symptoms. Had hysterectomy kept ovaries in 2015. My pain is extreme, severe, debilitating and crippling. I literally can't stand up on 2 feet. Crawled for 3 days. Hospital 2 times in 6 weeks. First thing doctors say is you must have a bladder infection. You must have a STD. Since I have 250++++ blood in urine, the doctors then look at results and say oh you are right, it's not a uti, no infection present. Then they ask were you menstruating when you took the urine test? OMG-I have had a hysterectomy and this is how I know they don't care and don't listen to nothing. I'm literally paralyzed so the best they can come up with is you must have mechanical back pain. It's so frustrating. But I found a new family doctor that is life changing. She is on my side. Sent for many test but all coming back negative for stones, infections, etc and so I have sharp shooting pains on right side, sciatica on left, horrendous back pain, pelvic pain, abdominal pain, severe shooting pain in hips, constipation, night sweats that are drenching, my urine is dark and I have to pee all the time but won't completely finish emptying or small urine passing, I'm extremely bloated, fatigued. But the worse of it all is the horrible pain that I can't move. Then it eases after 3 weeks and bang it starts all over again. Now I am going to pay for a private MRI. Has anybody had blood in the urine? My dr is shocked at the levels.

OMG, Kim, why don't they do another laparoscopy to see if you've got more endo? Maybe you need to print out some articles about how endo can come back after a hysterectomy. I mean, there must be some articles somewhere on line.

Well, print them out and take them to your docs.

Thanks I'm going to because I live in Canada we have very bad health care here. It takes months to get into a specialist and by the time they investigate it is more than a year before treatment. I've contacted the endometriosis care center in Atlanta Georgia. It appears the waiting list is 10 weeks for surgery. I'm prepared to go that route. No doctors care enough in Canada. I watched a documentary with Dr Albee and for some reason I already feel soothed knowing a doctor and his team is out there that really actually cares. But, I never thought about printing off information and taking it to my doctor. That's the best advise!! How are things going for you?

Things are going pretty well for me, Kim. Biggest problem now is the heat and as long as I have a roof, A.C. and water, I can't complain. Folks across the street have no AC, and they've got the added heat of 5 adult an 3 child bodies cramped in 900 sq. ft.

You are in my prayers, Kim, for all that pain and a fixable DX. You might go ahead and mail info to your Canadian doctors with a nice note that says perhaps they should be considering this for you.

Take care. Someone is always here.

Hi julie and nikki and all

I so feel your pain

My endo started in my teens

I managed to have 3 children but after my 3rd the endo kicked in big time at 23. With hundreds of visits to the doctors over a number of years they finally started to listen or gave up with me and decided to pass me on. I finally got to go and see a gynie. I had scans mri's and nothing showed they finally decided to to a lapropracsy (6 years later) they found that i had most server case of endo and removed all the liasions and scar tissue. had to have monthly injectìons into stomache to help keep pain at bay as pain had returnef with a vengence im pretty sure they didnt believe me this went on for about 9 months .

The pain landed up continuously without any breaks i could not even go and have a wee without screaming necause of the pain.

They decided a full hysterectomy but when they went in my urologist was gob smacked to see how it affected my bldder.

So it was an op on that at same time

I wad 29. I was put on tibilone which helped but i became very depressed which years later i still suffer with bad bouts of depression.

I am know 48 and about a year ago ive been suffering with real painful sex

And although my husband is very understanding i am finding it difficult to discuss and even go to the doctors, ss im probably afraid that the endo is back and it will be a struggle in them to believe me as it took 6 years first time around, and i dont know if im strong enough to go through it all again

Sorry its long winded

Regards michelle

Check out a documentary on YouTube https://youtu.be/81dpitSGKNA

It's about a team of expert excisionists surgeons that specializes in Endometriosis in Atlanta Georgia. Instead of burning off the endo they cut the whole lesion out. If is attacking to organs, you need a special team that can remove it for once and for all

Hi Julie I had a total hysterectomy back in July same as you im on tibolone which I have been on since April my specialist doesn't want me to go through the change im 42 but he says im too young anyway i am getting really bad pains in my legs and I have awful period pains which I don't understand because there's nothing there for me to get them the pains seem to be getting worse im constantly tired 😫 im seeing my specialist at the end of next month but I feel if I tell him about the leg stomach and back pains as well as other things he will think im mad lol I had a hysterectomy because I have endometriosis all I know is I have had enough now 😒

Hi Angie.

did you have everything taken away, and what method did they use. 

I was cut from pubic to navel.

it look me me months before I stopped having pain completely.i was told it could take up to 6 months to feel ok 

Once you’ve had a hysterectomy things move due to the space that your womb etc once filled, so that might be part of your pain.

also did they remove all the endermetrosis, they couldn’t with me.

42 is and was a young age to go though all of this, 

hope you get some answers from your gp x

 

Hi Julie I had keyhole surgery and yes everything was,removed i got really poorly after the op countless infections ? all I know is that im still in alot of pain sometimes to the point where I can't get out of bed and i have five children two youngest are 7 and 9 and im a single mum so it makes life really hard had another sleepless night because of the pain x

Blimmy sounds like you’ve got your hands full, and being a single parent.

it must be hard for you. 

you do need to see someone, and I wouldn’t wait till the end of the month either.

you must be worried sick, 

please keep me posted on how you are doing. X

You sound exactly like me I take Norco like candy just to function I feel like a idiot even speaking to my dr anymore because it’s constantly something like I’m looking for more drugs when I just want fixed. Your pee does it have a awful smell too?

Hi ! I realize that your post is almost a year old but I wanted to give you just a bit of my experience that I've had with a total hysterectomy in lieu of you or someone may still needing help regarding this.   To give you a little background, I  had to have a 3 laparatomies  & a colon resection with the last laparatomy I had because of endometriosis. These were surgeries all prior to a  TOTAL HYSTERECTOMY. I was NEVER  relieved of all pelvic pain from having a total hysterctomy. I too,  kept thinking I was having Uti's, one  right after the other.  After seeing many doctors and doing ALOT  of my own research, I learned the reason I was having  "UTI, ENDO LIKE PAIN" was because I had THE DISEASE called,  IC or the full name is  Interstitial cystitis! I learned that once you go through a hysterectomy or start having menopausal symptoms, some doctors believe it brings on or exacerbates  IC !  IC CAUSES SEVERE BLADDER PAIN, PELVIC PAIN , BURNING an EXCESSIVE URGENCY! . If you have not been evaluated to see if you might have IC, this might be something you would want to consider. I'm not a physician, just only speaking from my experience. If you have any questions, feel free to ask. Currently there  is not a cure for IC.  They have made great strides with  gaining  more knowledge about this horrific disease. When I was diagnosed in 2005 there were very few doctors that had even heard of this disease! They are continuing to make great strides in finding a cure! I pray this will be helpful in some way! Blessings!!

Here are some things that can cause our urine to smell:

- consuming very little water on a daily basis

- excess of B vitamins

- eating a lit of asparagus/artichokes or licorice

BUT various infections and some meds can also make our urine stinky. If none of the above apply, please see a doc soon. It's not unusual to have a UTI without all the burning pain which usually sends us off for treatment.

Hi kim..i know its been awhile...have you had any luck...i just read this post and it was if i wrote it myself....!!!!!