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Endometriosis pain after total hysterectomy
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An_200875 posted:
I had severe endometriosis, and after multiple surgeries (got one child, thank god!), I was having constant low back and pelvic pain. So I decided to get a complete abdominal hysterectomy. Although the pain is less intense, it is still always constantly there. I have done tons of research online, and have read about a lot of women that still have endo after hysterectomies. It makes sense to me, but my gyno said that he doesn't think it's endo, the hysterectomy should have taken care of it. He has now shoved me off to a pain doc, which is fine, but he's frustrated because he says he doesn't even know what he's treating me for. He wants a diagnosis, he's not going to treat my pain forever. I really don't know what to do. I'm trying to find a new gyno, but unfortunately, it sounds like the only way to really confirm anything is through a laparascopy. But I just really don't see the point of going through a surgery, paying thousands of dollars, when there's really nothing that can be gained by it. Just wondering if anyone else has had any experience with this and has any advice?
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luda17 responded:
I have a question. I have never experienced this but you said you have severe endo and multiple surgeries but have one child. Did you have your child before you were diagnosed or after? im just curious b/c i was diagnosed when i was 19 back in 04 and have had mult surgeries and put on lupron twice and still in pain. my gyno as well told me there was no more he could do for me and sent me to a pain management doc. made me feel like an addict when i know i was not. Last surgery they found few areas that had endo growing on it but i feel like after the laporoscopys its about 6 months to a year and all the symptoms are back again. its soo frustrating b/c i wont have a hysterectomy b/c i want children if i can even conceive. thanks for listeneing. best of luck to you
 
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hopeful2218 replied to luda17's response:
Hi Girls,

First to address Luda, yes, you can definately have children with Endo..even advanced cases of it. So do not think you can't have children. Second, most women do experience their pain returning after a lap, this is because the surgeon did not remove all of the endo. the most common form of removal is abalation. (that is actually a very outdated method of removal) Which is just burning off the top layers of endo..which means it's still there and will return..sometimes with a vengence.

Also Luda, you asked if Anon concieved before or after her diagnosis...If you have endo, it will begin with your first period..so it makes no difference if you concieved before or after diagnosis..


To Anon: The occurance of endo returning after a hysto is very close to 80%. Most of the times, when it does return it again will return with a vengence. You did not specify if you had an ooph also (both ovaries removed). Either way..our bodies still make estrogen..that is what endo feeds off of. So even with removing all organs the Endo will most likely return.

Yes, you will need another surgery...

For the both of you..going to your average ob, is normally going to yeild the results you are having right now and the one's you've had in the past..short term pain relief. So, what us ladies do, is see Fertility Doctors (it doesn't cost anymore than your ob visit, because you are being treated for Endo, not fertility).

So my biggest advice is that you girls find new doctors. If you were on Lupron, I really hope you were on addback therapy....and had your Dexa Screening and blood checked often.

Here is a link to a website that is full of all the information you can imagine. It is easy to read, and you want to find a doctor with the same qualities as this doctor. Please try to read about the EVE procedure.

http://www.vitalhealth.com/

If you gals need help finding a doctor, feel free to ask me. You may click on my screen name and you will see my email addy listed. Please include in the email your screen name, city and zip code, and how far you can travel. example I travel 4 hours total to see my doctor..but I only need to see him every 6 months or so.

Over 5.5 million women in the US alone are diagnosed with endo (and an unknown number of women who have not been diagnosed with it)..yet not much is known..so please don't put any of the burden onto yourself...repeat surgeries, surgeon's not being up to date on current methods of removal etc...lead to the situations you are in. So know we are here for you and you are not alone!

Also, with the technique of EVE and Excision, it yeilds a 90-95% success rate of Endo never returning!!!! Don't lose hope..because their are good doctors out there who can help you regain your life back!!!

Best wishes, I hope you will keep us updated!
me, 29 dx'ed with endo in 09 via lap, Fibro, RLS, SVT, MS. Administrator to this board.
 
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luda17 replied to hopeful2218's response:
thank you so much or responding. And to answer your question about the lupron. Both times i was put on it i never had addback therapy or dexa screening or my blood checked. Were they supposed to do that both times? And you put things into perspective for me and i appreciate it very much. And I will take your advice and look into that website and a better ob and see a fertility specialist. Thanks again! Take care
 
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hopeful2218 replied to luda17's response:
Yes, addback therapy is a MUST with Lupron. I am suprised you toughed it through 2 rounds without it. You definately should have a DEXA screening (xray to check bone density) because lupron can take a lot of the density out of your bones.

If you need help finding a doc, let me know, I have a pretty good list of doctors for many states.

Best wishes!!!
me, 29 dx'ed with endo in 09 via lap, Fibro, RLS, SVT, MS. Administrator to this board.
 
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luda17 replied to hopeful2218's response:
well that makes me a little scared lol.. I knew that my bones could be effected by the lurpon and the 1st time i was on it i had to wait 6 months for the next round. I hated the Lupron. Night sweats were the worst id wake up freezing but soaked in sweat. My cramps still were there randomly in the beginning. It made me feel sick at times but had already tried birth control many kinds of it was on depot for 3 years and had started birth control when i was 13 So i figured lurpon was my last hope after 4 laporoscopys in 2 1/2 years. I wonder why they didnt tell me about addaback therapy or the screenings. since then i've had surgery on my foot and the bones in my feet or healthy and strong. My arthritis has gotten worse unfortunately but other then that hope my bones are good.. I also remember my Doc telling me lupron also cause more of a risk to not be able to conceive. Is that true? Thanks so much for your advice and help..
 
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hopeful2218 replied to luda17's response:
The only way that Lupron can hinder your ability to concieve is if you take it often..and you do not ever get your period back. Lupron puts you into a psuedomenopause. Which is a medically induced menopause..on rare occassion, some women never get their period back.

Also, I can't believe that you have had that many surgeries in that short amount of time...I really think you need a new doctor!!! All those surgeries create scar tissue...which can lead to other issues when TTC.

If you read the material in the link I posted..it shows that a good surgeon can really take most if not all the endo away with one surgery and yeild a 90-95% success rate of that endo never returning. I'll assume that you had abalation...which normally causes the endo to come back with a vengence within a month to 6 months.

Taking Lupron without addback therapy can also lead to long term side effects that can really affect your lifestyle. So my personal opinion is to get a new doctor. I'd be more than happy to help..I do have lot's of doctors in many different states...I would not have another surgery unless it is by a devoted surgeon to Endo. They are out there and they can really make a difference in your life. That's why you had such a hard time with the Lupron...you had no addback which helps with all the symptoms from the Lupron. Also, I'm sure your doc didn't tell you that lupron is a form of chemotherapy...it's used in men to treat prostate cancer....

Pain management isn't going to help much..and they normally won't help us..because it's a "women's issue". You need a new doctor....click on my screen name and my email is listed.

I wish you nothing but the best and I hope you will stick with us and continue to share your story!!!

You are in my thoughts,
Amanda
me, 29 dx'ed with endo in 09 via lap, Fibro, RLS, SVT, MS. Administrator to this board.
 
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luda17 replied to hopeful2218's response:
thanks amanda so very much. And during all my surgeries i did have a lot of scar tissue that they had to remove as well..Not just from laporoscopys but also from my appendix. the doctor did tell me about lupron also being used or chemo for colon cancer i believe he told me and that is was a very powerul method. the last time i was on lupron was in 2007. Since then i did get my period back and up until about 6 months ago i was fine w/ no cramps small here and there and now the week beore i get my period my cramps kill me. my breast hurt rediculously and i can barely touch them.and the actual day of my period is at times unbareable like before. As of right now i do not have medical insurance b/c im a nanny. I live in Rhode island so i you know any Doc that are willing to do a billing cycle let me know. Otherwise cant really afford a specialist at this time unfortunately . thanks again for your time and advice means alot to me
~Laurie
 
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BrittneyisaMommy replied to hopeful2218's response:
just wanted to say that i never had endo until after my son was born. I never had any pain or period problems or anything until after my son was born... and then i had the mirena and everything went a little hooky. so i can honestly say that i never had endo with my first period... i was one of those enviable clock work every 28 days with little to no cramps kind of girls... i say enviable because i envy old me too!
Mommy to a 2 year old little girl and a 1 year old little boy. Diagnosed with Endo. after DS was born. But trying to work through the pain without to many heroic measures.
 
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lhemmer7 responded:
Hi! Yes, 8 surgeries then a partial hysterectomy, then a complete hysterectomy. I have alot of endo on my colon and uterers and feel it is eating me alive. After my last surgery my Dr told me he didn't take the endo off my colon because he was afraid I'd be using a colostomy bag for the rest of my life if he did. I hurt all the time. Funny isn't it. Gyno's will tell you a hyserectomy should rid us of this crud and we still live our lives in pain. I'm at my wits end. I still bloat, I still have so many issues. Sorry you are hurting too. Honestly, it feels good to see I'm not alone. Thanks for sharing your story.
 
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hopeful2218 replied to lhemmer7's response:
I'm so sorry for all of your pain! It is a battle to find a doctor who can assist you. Endo can be removed from almost any part of the body .. including your colon. I have Endo on my colon, which has created a transverse colon..basically, my colon does not contract like a normal one which means I only get to have a BM every couple of weeks.

I do some weird excersises (awesome spelling LOL) to help assist it in moving. If you would like to know what you can do to keep your colon moving, please feel free to let me know.

But..you do need to have it removed. Excision surgery plus and EVE procedure would probably yeild great results for you. You can visit www.vitalhealth.com and you will find a lot of great information about our conditions.

I hope you will continue to keep us posted!!!!
me, 29 dx'ed with endo in 09 via lap, M/C 12/24/09, currently on 2nd round of Lupron, Fibro, RLS, SVT, MS. Administrator to this board.
 
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momofthreeas replied to hopeful2218's response:
Hi. I was diagnosed in 2002 with endo, and have had several ablations and laps....I also have been fortunate to have three children (got pregnant within month of each ablation). I have been scheduled three times for a hysto, but something always comes up and it gets postponed. With the birth of my third child, in August, I had a tubal ligation. Now, my periods are worse, which I didn't think was possible...and the pain is horrendous. I am on my period or spotting 20 days out of the month and I have gained 15 pounds, while exclusively breastfeeding. My doctor did a ultrasound because I also have adenomyosis and fibroids and cysts. Today I had an appointment and was told that all of my problems are hormonal, and even though my history is as it is, I am not eligible for any treatments until I am through with my postpartum because that is causing my problems. Which is a minimum of nine more months. This EVE procedure is new to me, and I just want to say, thank you for sharing your story and your knowledge to help the other frustrated women out there! I hate that so many others are out there suffering, but at the same time, I am happy that I am not alone.
 
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brandib01 replied to momofthreeas's response:
am glad you found some comfort on here. people who do not have or have to deal with these issues do not understand. they can assume you are just whining or overexaggerating. but we know and definately our husbands/partners understand that when we are doubled over in pain and our face is flush and we are in tears obviously it is not a joke. i am assuming you have visited the vitalhealth website for dr.cook. he is a doctor that understands if you read his blogs you can tell that he gets it and feels for what we go through honestly. i actually have my first phone consultation with him today and i will keep all you ladies posted on how it goes.
but i hope you continue to come on here and share with us anything you are feeling we completely accept all questions and eve if you are just having a bad day and want to vent we will be here for you.
Brandi 27dx'ed.infertile06'w/male factor also-first lap 09'endo stageIV/PCOS/2-m/c08'09'my angels hormone deficient 7 rounds of clomid~~co admin..
 
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lhemmer7 replied to hopeful2218's response:
I usually don't have a problem keeping 'em moving. My bowels work weird I think. I used to have diarhea often. Now, sometimes I have bowel movements 5-6 times a day. A little here, a little there, alot here, none for a couple days. Strange. Whenever I have pain around the rectum I have to take pills to help me from having colon spasms. That's what my gastroenterologist says the pain is, spasms. I don't know if the endo has gone into my back, my spine, inside my colon. The gastro dr doesn't know what endo looks like. It would be nice to have a dr that deals with endo and ALL the issues caused by endo. The gastro dr and colorectal surgeon have both told me they don't deal with the outside of the colon. Frustrating! If the endo was covering my colon and uterers 4 yrs ago so bad that a pelvic pain specialist wouldn't touch it then how bad has it gotten? I used to have surgery every 1 - 1 1/2 years. Everytime there was alot to take off. They did laser it off. I'm sure I'm ate up with scar tissue. I can feel it around my belly button. Also, you mentioned lupron above. I went through Depo Lupron and Depo Polvara (spelling??). I gained 40 lbs in about 2 months. I feel like it changed my whole metabolism. I used to be about 125 lbs then I ballooned up to 165 and haven't been able to shed it since. Exercising causes the pain to become very bad. I can't hold my stomach muscles in without being in a lot of pain. Fast walking around the neighborhood is almost impossible. Thanksgiving Day I almost couldn't make it back to my house. Because my pelvic flooring is "falling" I feel like I'm carrying a full term baby inside me. That feeling like everything is going to come out of me. I think I'm to the point of exhaustion and sometimes it is very depressing. I work on my feet all day and do pretty good most days.
One last thing. I also have idiopathic hypersomnia. The sleep study Dr told me that it's like narcolepsy. I have to take meds to stay awake during the day. I feel so exhausted I feel I could collapse. Do you know if endo can be tied to any sleep disorders? I'm located in Louisville, KY. Any help you can give me is appreciated. You can click on my name and send me some info if you want. THANK YOU! It helps to talk to people who know what you are going through.
 
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lhemmer7 replied to lhemmer7's response:
Oh, I forgot, I too had adenomyosis. I used to bloat out like I was full term, very pregnant. Now, I bloat out like 5 or 6 mos pregnant. I guess that's a plus, not bloating as much since the hysterectomy.


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