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Posted 9/12/2009 1:54 AM (GMT 0)
This is what my gynae has now decided to do, both ovaries, uterus, the lot. I'm in a bit of a "don't know what to think " stage. But I'm hoping there may be some one out there who has gone through this to reassure me its the right decision. He feels because of my age (49) and the extent of the endometriosis, I have multiple cysts on both ovaries plus my uterus is/ has? andinomyosis??? I know I've got the term wrong but he feels I may be at risk of developing Ovarian cancer. I can't seem to find much on this except fora brief mention on some of the endo sites. Anyway from a week off work , I'm now looking at 4. Frm 1 night in hospital I'm now in for 3/4 and I assume alot more pain. But hopefully it will stop my bladder/ digestion problems and wipe out this horrendous cyst pain I've had for so long I can't remember when it started. Plus the cost, although I guess I'm saving in the long scheme of things. I'm also extremily worried about going off my RA medication, my rheumy has told me to start taking prednisone after the surgery until I can go back on my meds but I have to miss two possibly three doses of humira. Its an injection I take once every two weeks but because of its long half life, I have to get it out of my system. I've missed one so far but only 2 days ago so still alright at the moment. I also have to go off my anti inflammatories, they stopped yesterday. I feel a bit like a house of cards waiting for the fall!!!

I guess I'm looking for a bit of Healing Well's tender care to help me through this, some how losing my womanhood is a wierd feeling, thrown into menopause must have some plus sides, I guess its the emotions that have to catch up with it all. Anyway surgery is september 21st! So I have just over a week to get my head around it. He said I can change my mind on the day if I want the lesser surgery but feels I'll be facing more later down the track!

Should I seek another opinion? What do you all think?

Worried, golitho

Posted 9/12/2009 3:25 AM (GMT 0)
A hysterectomy does not cure endometriosis. It will help with the adenomyosis pain but if the endo is not removed, it could still bother you. There is a lot of good information about endo at the Endometriosis Research Center (ERC) site, www.endocenter.org. You can also get a lot of good information about hysterectomies at the Hyster Sisters site.

I have read that those of us with endo are at an very small increased risk for certain cancers, ovarian and breast cancer among them. One worry is that we are so used to ignoring our abdominal pain that we'd overlook the symptoms of cancer and not get diagnosed early enough. In general, it is a very small increased risk. You may want to ask your doc what reasons he has to suspect that your risk is higher than normal.

Always, always, always get another opinion before surgery. Once you have your organs removed, you can't get them put back in. This surgery can be very rough. Sudden onset menopause can be as difficult as the pain and problems you have now. Some women sail through it fine but for others, it is terrible. When you do your research, pay the most attention to women that are 9 months or more out of surgery. Most women feel better for a few months after the surgery but some have the pain return later.

Ask your doc what he will do if your endo pain comes back in a year or two after the surgery. Removing the ovaries does not always "dry up" the endo. Endometriosis can produce its own estrogen. It needs to be removed, not burned off.

I'm not against hysterectomies, but I worry that too many docs promise you the world and then turn their back if/when your pain returns. Do your research so you can make the best decision for yourself.

I am very passionate about endometriosis and the mistreatment many sufferers get.
Posted 9/12/2009 3:54 AM (GMT 0)
golitho

I will leave all the advice to the ones that know! But I will tell you that I will keep you in my prayers, and I do wish you all the best! You have always been there and given me support when I have needed it! Well I am also here for you!

I do wish you well!

White Beard
Posted 9/12/2009 8:17 AM (GMT 0)
Golitho,
It's the middle of the night, so I hope I make sense! This is just my opinion, but if it was me I would wait (unless it was a life-threatening emergency) until I got at least one other opinion, did some research and really understood all my options. Now if there is any kind of real chance of ovarian cancer (there's no reliable way to test yet, as far as I know, although there's been some work in that area) I would definitely have the hysterectomy including removal of ovaries. Ovarian cancer is nothing to fool with. But hysterectomies are among the most (if not the most, I can't remember the statistics) common unnecessary surgeries done. So even if you have to postpone the date of the surgery, I would think it would be worth getting more information, so that you know exactly why you're agreeing with your doctor that this needs to be done. Notice I said that "you're agreeing" meaning you have a say in this.

In my early 50's I was having all kinds of problems with uterine fibroids, which are common and almost always benign. They were causing some excessive bleeding and periodic anemia, but I knew that time was going to take care of things. My GYN wanted to do a hysterectomy, and we even had it scheduled. I followed my gut and got a second opinion - by phone - from a former colleague of Dr. Christianne Northrup. I had to private pay, but it was well worth it. I changed my mind only a few days before the surgery. Wow, was my GYN ticked! And then later that summer the results of the study about the downside of HRT came out. So if you feel like you're being rushed (and it kind of sounds like you do feel that way), take a breath and take some time. I'd definitely get a second opinion for any major surgery unless it was an emergency.

Don't know if this helps, but I thought I'd share a bit.

PaLady
Posted 9/12/2009 10:21 AM (GMT 0)
Golitho,

Due to excessive bleeding and pain, I had my complete hysterectomy 10 years ago when I was 44 ---I contend that it was the best thing I could have done. I was placed on HRT (Premarin) immediately. Over the years the HRT has been slowly decreased, and I've had NO adverse effects.

I was given the freedom from (that particular) pain, and I've never regretted this decision, absolutely no regrets!

Prior to consenting to surgery, I had gone to several gyns, desperately searching for an answer to my constant misery. I felt I had exhausted all other options, had obtained enough "second options" to warrant my decision to have surgery.

I hope you're able to get relief asap.

Yankee girl
Posted 9/12/2009 11:50 AM (GMT 0)

I have mixed feeling about this.  I'm an old broad...LOL...and had a complete hysterectomy when I was 23 years old.  Prior to this, I was going into the hospital about twice a year  and having HUGE, bleeding ovarian cysts removed that wouldn't break open on their own.  I also had something terribly wrong with my uterus...can't remember the name but varicose veins had formed on it and were breaking and bleeding due a very heavy set of twins I carried around for 9 months.  Furthermore, due to constant bleeding I became anemic and could never tell when I was having my period and got pregnant again before the twins were a year old.

They took everything except one ovarian stem which they hoped would release estrogen...NOT.  I went directly into menapause.  Back then they gave huge does of estrogen and the pills gave me horrible vascular headaches.  I had to go off.  As a result...wrinkles, dry skin, etc at a very early age.

I know things have changes since the 70's.  I would get a second opinion if you are at all uncomfortable with having this drastic surgery.  I don't believe I had any choice at that time, but now I might have had an alternative...don't know.

Huggies

Donna

Posted 9/12/2009 12:18 PM (GMT 0)
Thanks everyone, Dagger and PAlady you've certainly helped me put into words some of the worries I have. I do feel rushed, so I've contacted my GP who is going to get me a second opinion with another gynae. I really appreciate the opposite side too, Donna and Yankee Girl plus your prayers White Beard.

I definately want my left ovary removed as it is a constant thorn in myside, quite excruciating at times. He is going to surgically remove all endometriosis he can reach which ever surgery I decide to have, plus he did tell me that even with both surgeries I may still get endometriosis because oestrogen is released by our fat cells. Great huh!

But if I have the hysterectomy he feels it will stop other issues happening. My body seems to produce alot of cysts ad he feels this is the reason I am more liable to have white cell ovarian cancer. He is an endoscopic surgeon who specialises in endometriosis.

I guess my thinking is why the uterus as well, is this andenomyosis that worrisome? I know I bleed a lot but I'm not that far off menopause.

He did say he would taper me off HRT within 6 months and he has lots of alternative treatments for it if I'm interested. I feel I'm stuck between a rock and a hard place. Dagger have you needed surgery constantly? My head is in a whirl, I'll go vsit those websites, thanks guys, golitho 

Posted 9/12/2009 2:00 PM (GMT 0)
Sorry for what you are going through Goitho.... I cannot help but just wanted to say we are here for you!
Posted 9/12/2009 2:25 PM (GMT 0)

Golitho,

I have to agree with PALady, please get a second opinion and third if necessary.  I worked in Ob/gyn for 5 yrs. try the alternative methods 1st.  Sounds easier to just take out the organs, but they are an important part of hormone function!  Other methods do work! 

Good luck in whatever you choose and of course we are here for you no matter what!!

XXOO
Patti

Posted 9/12/2009 6:36 PM (GMT 0)
It sounds like your surgeon is pretty knowledgeable about endo. Far too many tell women that a total hyst will cure them completely. I'm glad he knows that women can still have endo after a hyst.

I've had two surgeries specifically for endo, the first one was about 7 years ago, the second, about 7 weeks ago. I had my first surgery because I kept having cysts on my left ovary explode bringing me to my knees (never fun while driving!) He removed endo, scar tissue, and part of my left ovary. I had relief for a few years but the pain started to slowly return about 2 years ago. At least the monthly exploding cysts stopped. The second surgery was to repair a hernia and remove endo. I still was a stage 4 despite the previous surgery. It''s hard to tell if this surgery helped, I had some minor complications that are causing pain.

I chose not to have a hyst because my uterus is not causing my pain, the endo is everywhere causing pain and adhesions. Despite removal by skilled surgeons, it keeps coming back. My doc does not want to take my ovaries because I can't touch hormones so if I have problems after the surgery, I can't take HRT. We both believe that, in my case, removing my ovaries would decrease my quality of life more than the endo does. I'm hoping that I am one of the lucky ones that find relief after menopause.

Your situation is different. Adenomyosis is not dangerous but it can be very painful and many women find relief when the uterus is removed. If a lot of your pain comes from your uterus, removal may help. I can see why you'd want to have your left ovary removed, cysts can be sooooo painful. I was lucky that my cysts stopped after the surgery, otherwise, I would have had it removed this time.

Ovarian cancer is scary because it is hard to detect early. The decision to leave the ovary won't be easy. That's why another opinion or two may help. If you decide to keep it, it can be removed later. My friend just had an ovary removed and said the surgery wasn't bad at all. I'm not trying to minimize that pain and risks of surgery but always remember: it is your body and you have options.

Take as long as you need to make this difficult, life changing decision. You need to be as comfortable as you can be with this decision because you have to live with it.
Posted 9/12/2009 8:31 PM (GMT 0)
I didn't have endometriosis, but I did have huge fibroid tumors and had a complete hysterectomy when I was about your age. For me, it was the best thing I ever did. I did take HRT briefly, which you wouldn't want because of the endo, but there are other options available now.

If you do decide on the surgery, I didn't find it to be that bad. I had a full incision because the tumors were too large to remove vaginally or endoscopically. I went home the following day and back to work in a month. I could have returned to work sooner, but my gyn wouldn't let me drive.

Good luck with whatever you decide, and I hope you're feeling better soon.
Posted 9/13/2009 1:36 AM (GMT 0)
you know that they can do a total hysto. with the Davenci Surgical Robot. Its like a 2 day recovery and minimal pain. THey do it at my GYN clinic. IS your doc wanted to to an open? Hey may if he wants to remove endo, just a thougt
Ang
Posted 9/13/2009 7:36 AM (GMT 0)
Thank you everyone, I think I feel more worried today than I did yesterday.

Ang, he is doing it via 4 portals endoscopically, seemingly he is very skilled at treating endo. He is making me do a bowel prep so he can check out my intestine as thoroughly as possible. Dagger, I am cramping all the time, as it is generalised I don't know if its just my uterus or not, definately both ovaries are stuck down with adhesions and covered in cysts. He tells me I'm a mess. I joined hyster sisters so thank you for that site.

So good to hear some positive stories too, the survival stories, Sandy and Judy.

I'm definately getting 2nd opinions...

But a big thank you to you all for caring, emotionally I'm on a roller coaster. Feel really positive one minute and feel like burying myself under the quilt the next....golitho

 

Posted 9/13/2009 7:56 AM (GMT 0)
Golito,
I actually think this is the worst part - collecting information, and making an informed decision for yourself that you and your doctor feel is right for you.

Please don't take my story as being negative on the surgery. I just think a second opinion never hurts, especially regarding the possibility of ovarian cancer. If doctors told me that I had a higher probability of getting that, I would have the ovaries removed in a heartbeat. Many people survive surgical menopause, and short term HRT isn't that risky if managed properly. Ovarian cancer, however, is serious stuff. Not worth messing with, IMHO.

I know this can get confusing. I'd suggest getting your medical opinions, maybe reviewing a little research, and reading a few (but not a ton) of opinions like mine and others - which can drive you batty! Because none of us can know what's going to be right for you. It just seems to me (from what I read in your posts) that you have time to catch your breath before you make a final decision.

I remember what it was like changing my mind, and it wasn't done until the last minute. I was very unsure if I was making the right choice. Just like with my lumbar fusion. Sometimes we can just do our best, make the best decision we can at the time, and move forward.

There's a nurse in our region who has written a book I think it's titled Sudden Menopause (or maybe Surgical Menopause) based on her experience after having ovarian cancer and having everything removed. She is alive and very well many years after the cancer, and she does a lot of speaking and health educating, including incorporating holistic strategies to help deal with it should you have your ovaries removed. Her name is Debbie D'Angelo, R.N., and I think the book should be available on amazon or maybe through a library. But make your decision first. No need to compllicate it with that information at this point.

Hugs,

PaLady
Posted 9/13/2009 8:00 PM (GMT 0)

Golitho,

I was 32 yrs old when I had my total done and that the was the beginning of the best days of my life lol. I had horrible fibroids and massive bleeding. I had incredible pressure and pain in an extremely delicate spot 24/7. It was a constant period for me. I was anemic and sick all the time. After the surgery I went on HRT and did just fine. Now, I take an all natural product and I am off th rx one.

My poor sister-in-law had severe endo and she has endured more pain and problems than probably anyone I know with endo. I saw her be perfectly fine one minute and be doubled over in agony the next. This was her life for a long time. Then finally they recommended she under a complete hyst.  Before her ins would pay for the darn thing they require her to go thru a series of shots that brought on the "change" during this series of shots. Gawd she got to suffer some more thanks to her ins company. Well, obviously that was not the fix like they had hoped and she had her surgery. Her dr came out of the operating room and spoke with my brother and I and he was in shock. He had absolutely no idea how bad it was until he got in there. That mess had grown and wrapped around her intestines and other organs. He said it was much worse than he ever thought it would be. He had to do alot of cutting and scraping to clean her up. When she came to, he was there and the first thing he did was apologize to her because she had been complaining of the severe pain and he took little note of it. If my sister-in-law was writing this post she would tell you that was the best thing she could have possibly ever done for herself. Some of her friends have gone thru it and they always came to her and asked her questions and so far none of them have regretted it. In fact, they all wished they could have done it alot sooner. Its been many years since her surgery and nothing has came back either.

One thing I have always noticed and said. If you line up 10 people whether its to have surgery, a tooth pulled or whatever, the stories always seem to get a little bit worse when you go down the line.

Only you know how bad you feel and how much you are willing to put up with.  But, its sort of scarey knowing it can continue to spead by doing nothing. Creepy feeling.

Posted 9/14/2009 10:14 AM (GMT 0)
Thankyou Susie and PAlady, I appreciate both your replies. Susie its good to hear your sister in law is now doing so well. PAlady, I'm not treating your post as against surgery, just to really think before I leap, so to speak. The hyst has taken me so much by surprise, I had no idea there was anything wrong with my uterus, just assumed all my cramping was from endo growing all over the place. I'm certainly going to ask what about just taking my ovaries...

But Susie your sister inlaws story really touched me, I remember when I was at my worst I had an ectopic pregnancy and luckily I was bleeding, because I just accepted the extreme pain of it as being endometriosis. If I wasn't bleeding fresh blood I probably wouldn't have investigated until it burst or something. Your sis in law must have been in absolute agony.

Plus good to hear your own hyst went so well.

I was just talking to another specialist PAlady and now have some decent questions to approach my own surgeon with. So feel a bit more settled with in myself, though extremily nervous. 

Thank you both so much, golitho

Posted 9/17/2009 10:59 PM (GMT 0)
Hi Golitho! Just thought I'd throw in my $.02 worth. And please, this is only my own story/opinion. I definitely agree with those who stressed getting a second (or even third opinion) - and do LOTS of research (use a combination of search words). I SOOO wish I had gotten other opinions before my hysterectomy. And I wish I had researched my options. I won't bore you with the medical reasons/causes behind it, but they ended up removing my uterus and just one ovary (mainly to avoid instant menopause). Because of my pre-surgical pain issues, I was satisfied (but sad) with my decision. However, I did not take my own advice, and I plowed ahead with the surgery because I was just so desperate to get rid of my life-altering pain. Well, not too long afterwards, I discovered that there WERE alternatives to a hysterectomy. I was devastated. I know that may seem like a pretty strong word, but it fits for me. The one thing I have always done well is have babies. Not that I was planning on having anymore children, but I knew I could if I wanted to do. The finality of the hysterectomy was a very difficult concept for me (and still is).  And I know what you mean about the feeling of "losing your womanhood" - I felt the same way. But our womanhood is not defined by our internal organs  (or even our breasts) - you will still be very much a woman - just one who no longer has to put tampons and maxis on your shopping list! :-)   Unfortunately, I still have pain. I was better for while, but slowly the pain increased, and is still increasing. Adhesions were my main problem and the hysterectomy created its own scar tissue, so the pain saga continues......

The post-surgical pain was really not that bad - less painful than my previous 5 c-sections. Recovery wasn't too bad either, just a few weeks and I felt pretty much back to normal.

 

Anyway, whatever you decide will be the right decision for you. My best advice is to just step back and take your time with your decision (unless it becomes an emergency situation, of course). I rushed into it and deeply regret it - I don't want that to happen to you. You'll be in my thoughts. :-)

Posted 9/18/2009 3:50 AM (GMT 0)
Thanks Splash, I'm sorry you have increasing pain. Adhesians are one of my problems too unfortunately. I do feel a bit more resigned to it now, after the initial headless chook few days! I've discovered quite a lot about why he wants to take it all out, but he promises me he will be conservative. If he goes in and things are not as bad as he thinks they are then he will go back to his original plan. Seemingly the adenomyosis won't resolve even with no estrogen if its more than a certain thickness, so it all depends on what he finds. I know its not a cure because I have stage IV endo, it will not be possible for him to remove it all but he will try to remove all he can reach.
I've heard alot of conflicting info over the last week but lots of people who have had it done say when the pain comes back its not as bad? I can only hang on to that hope because at the moment it feels as if I have a couple of fish hooks in me to add to all my general cramping.
My knees are beginning to swell and the pain is increasing in my hands and feet, my body wants its RA drugs....such is life! Golitho
Posted 9/18/2009 7:06 AM (GMT 0)
I have this awful affiction and had a full hysterectomy about 4 years ago and besides the heartache of never getting to have a 2nd child as my one remaining ovary was taken it was the best decision I could have made. The pain was awful and I had Stage 4 as well. I had 6 laproscopies 2 laparatomies then the hysto what was hard as well was the hormone challenge. I smoke and therefor I was afraid to take HRT but I finally did find some gel I would tolerate that you rub on your upper thighs and I have done well with that, it is a RX.

Whatever decision you make, let it be YOUR decision......You cannot go back once it is done.....

Hugs,
EMT Jenn
Posted 9/18/2009 3:07 PM (GMT 0)
 

 

   Dear Golitho,

 

     I am so sorry I have been away far too long *warm huggs* As you know my medical knowladge is very limited (though growing via healing well and wikipedia). I did however want to stop by!! with

*WARM HUGGS*

If there is anything I can do to help, please let me know. You are so very strong, dedicated and a truly selfless soul! Your care and understanding for others is very precious. *warm huggs* stay strong!

 

*warm huggs*

   dani
Posted 9/18/2009 11:05 PM (GMT 0)
I had a full hysterectomy at 24 due to cancer.  I went against all doctors orders and had two more kids before I started to bleed excessively when my youngest was 6 days old.  The uterus just gave out.  It was a new surgery back then (15 yrs ago) they went in through the hoo hoo and cut the urterus out that way.  Faster recovery but not very comfortable the first week.

Its a choice thats individual.  My sister has endo and has opted not to have the surgery.  She is still holding out hope to have at least one child.  Her pain get so bad it makes me cry.

I wish you well on your difficult desicion ahead.

Laurie

Posted 9/18/2009 11:56 PM (GMT 0)

Golitho,

I had a Hysterectomy when I was 29....also had a bladder tack so they cut me wide open....It wasn't the most pleasant thing, but I'm sure it could have been worse.  I had my son at 27, started the Depo shots for Birth control the next day...then I had my period for 2 straight years....never stopped.  They tied my tubes first, gave me BC pills to try and stop the cycle, then did the Hysto....  The recovery was awful...I had a Super Cathater and a Pee bag for a week....that was fun in the summer... But, I tell you what....it was the best thing ever.... I did go through a phase of mourning for a few months... Not wanting to have more kids I thought I would be okay, but I wasn't... When it's final it seems to hit you real hard...But with you being older it won't be an issue...

I am so glad I did it...they took everything but one ovary... they didn't want me to go through surgical menapause... But not having to get Pap smears is great...no more cycles.....and not worrying about getting preggers.... Plus it fixed the problem...

So, good luck and don't worry... We, as CPer's, have enough to worry about... You will do fine.

Me.

Posted 9/19/2009 1:04 AM (GMT 0)
It's funny how those organs can affect us. I've never been one to want children. I'm one of those people who are happier with children on the other side of glass. Back in the day not only did I want a smoking and non-smoking section in the restaurant, but I hoped for a children/non-children section someday.

I had some endo, but most of my pain was not endo oriented, it was due to the fact that my uterus was trying to turn itself inside out when I was cycling. It was moving in a way she had never seen before. My gyno suggested an ablation where they remove the lining. It would render me sterile as I would have no place to host a fertilized egg if I were to become pregnant. I was 35 at the time, and I had never wanted children.

I went in and had the surgery, thankfully no incision as they used existing orifices of the body to enter to uterus. No major complications. Everything went as smooth as can be.

about a week later I realized suddenly that I couldn't have children and I was devastated....for about 15 minutes. That's when I realized that if I had wanted children I probably would have had them by now. But it's funny how the hormones can effect you.
Posted 9/19/2009 3:23 AM (GMT 0)
Piercings,
Have you had any side affects from the ablation? It's an option I just started investigating.
Posted 9/23/2009 2:44 PM (GMT 0)

Hi, i will give u my story.

I am so happy to see so many that have done well w/ their hyster. I however have not. i had my hyster Jan 21, 2009. I am 36 yrs old. I have had two children.

Past history, severe bleeding 10-14 days at a time, could skip one wk then start again, heavy clots, sever pain. Chronic hemmorigiac cysts that would burst inside and spill all the junk inside me. Issues w/ endo that was removed a few times that always grew back. Few surgerys to remove ovarian cysts, endo, adheasions.

We made the decision to have a hyster. I had a TAH (total abdominal hysterectomy) and was opened in a large bikini cut. Everything was removed (ovaries, tubes, uterus, cervix).  As it turned out pathology did show that my uterus was destroyed, diagnosis, adenomyosis. There were 5, yes 5 hemmoriagiac cysts on my right ovary at time of removal and uterus weighed twice it's normal size.

So, while i KNOW it was the right thing to do, i am now left feeling very alone and don't know what else i can do to fix how i am feeling.  I feel like all i did was trade one set of problems for another.....

after hyster, recovery was hard, but i did it. however, i lost my appetite and had no will to eat. I ended up losing 14lbs, going down to 86lbs on a 5ft 7 frame.  Had a horible time w surgical mediapause, and ended up on HRT.  I started having pain about 2wks post op and it was determined that i had a trapped nerve in my inscision. Second surgery the got the trapped nerve, and found a hernia and repaired it.  I currently have another hernia that i am waiting repair.  My HRT started giving me bad migraines, so we have tried to switch and im now in hell w/ hot flashes/cold flashes, lack of appetite again.

I have sought the help of a shrink and a nutritionist and my GYN is working very closely w/ me to , but i just can't seem to get myself to the point of being able to say that my hyster was the best thing i ever did......

i wish u luck in your decisions, do not take it lightly. You could have a great recovery, or u could have compllications, u will not know till u do it, but i just wanted to share my story so you prepare well,a nd so u know it does not aloways go great.  my thoughts are with you!  hugs, shannon

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