PCOS, Lupron, Hysterectomy, Etc.

P

Pollytc

Cathlete
Hi all. Well.....where do I start?

I have been having girly problems since a very young age, and I will be 39 next month. I have had various problems throughout the years, with this past year really being rough for me. A few years back I switched my family doctor, and I think that is the best move I have ever made. She referred me to an ob/gyn that specializes in women's health. After much testing of the hormones and going over past medical records and family history, he diagnosed me with PCOS (Polycystic Ovarian Syndrome). That is my first set of problems. lol. Secondly, he did surgery on me last week....laprascopic surgery, a H scope (hysteroscopy), and a D&C. When I came to and he came to talk to me, he said there was alot going on in there. I am covered with endometriosis in the pelvis area, I also have ademyosis (internal endometriosis), my left ovary is enlarged and had many cysts and adem inside and an extra large cyst outside of it, which he removed during the surgery; my uterus is inflamed (he said that could be from the ademyosis, or from an infection), by small intestine was down in my girly area and was "trapped" with adhesions, also one of my ovaries are trapped with adhesions. When I went to see him on Monday, he gave me a few options. In a nutshell, I am destined to have a hysterectomy. I can take this shot called Lupron for the next six months. Lupron shuts the ovaries down and puts you into menopause, or I can can the hysterectomy now. I thought I would do Lupron to buy me some time, but then I came home and did my research and I really didn't care for the what I was reading.

Has anybody here taken Lupron? What did you think of it? On the other hand, have any of you had a hysterectomy at an early age? What are your thoughts on that?

I know this is long, but I am trying to get as much feedback as possible before I make this big decision.

Thanks so much for taking the time to read this, and any feedback that you give to me.

Kim
 
Hi Kim,

I have PCOS and desperately want a hysterectomy, but my insurance won't cover it because it's not "medically necessary". My doctor keeps putting me on hormones, but I just don't do well on them - they make me depressed, dizzy, fatigued, hungry, etc. I'm going to make an appt. soon and beg my doctor to give me a diagnosis so that the surgery is medically necessary.

I did take Lupron when doing infertility treatments many years ago, but I would only take it for about 4-5 weeks at a time if I remember correctly. I didn't have any problems with it, but I know that some women do because it puts you into menopause. And, obviously, it's no fun giving yourself daily injections.

Sorry I couldn't be any help!

Good luck with your decision...

Erica
 
I took Lupron before having an ablation 2 years ago. Can you have an ablation instead? It is a hysterectomy alternative, which burns off the lining of the uterus causing a very thinned lining to return so thin that some women (20%) never get periods again and others only get a very light one. I had a very light one but am now experiencing a lack of one. If your ovaries and hormones are the problem then you might need the surgery. Lupron is very expensive and has to be approved by your insurance before given. I only had it one time.

I really pray you get it all worked out, I am in the same boat and just started provera to try and my cycle started after going what is now 57 days with no period and I am not pregnant.:) :eek: :( Life as a woman, sometimes I wonder....;-) .

Keep us posted on what you decide!:D
 
Hi guys. Thanks for responding. If I do go the lupron route, it will be six shots, given once a month by my dr. Unfortuntately, a hysterectomy is invevitable, and since the ademyosis is an internal endo, that is the only way to get that out.....via hysterectomy, not to mention the other problems I am having. Thankfully I am not wanting anymore children (have one great daughter), so that is not part of the equation for making a decision.

Thanks again!!

Kim
 
Kim: Stay away from Lupron!!!!!!! very bad drug. bad side affects ect! you did your research. go with your gut feeling!!! i have internal endo, and endo all over everything! i have had three surgeries, but some is microscopic, so they can't get it all out. your case sounds identical to mine, but add IBS and the fact that i am only 25. i had gynos trying to get me on lupron for years and i refused b/c of the experiences some of my close friends have had with it. so they keep doing surgeries(mostly laser) and have me on continious bc pills so i don't have periods at all and the endo can't grow. so far it's working. they won't do a hysto until i'm 30 or have had a baby (even though they say that's most likely impossible) doctors are so stubborn!!!! anyway, not to get off track.....don't take lupron and get the hysto if they'll give it to you. then you'll be done with it and can get on woth you life.


jes
 
Thanks for the advice, jes. I actually cannot take bc....haven't been able to ever. My body produces too much estrogen (alas the endo and adem) and can cause major problems, even kill me if I took bc pills. I do think I'm swaying towards the hysterectomy. I can't see how prolonging 1/2 a year is going to make much of a difference.

Thanks again!!!

Kim
 
Hey Kim! I turned 40 last year, and had a hysterectomy last year as well. It was probably the best thing I have ever done for myself. My trouble began at the beginning of 2004 when I got 2 periods in the month of Jan, skipped Feb, then had a non stop heavy period for say about 7 months. I tried several bc pills to try to regulate the period, but it just never stopped...I gained a lot of weight(I thought the nonstop flow was bad....but the weight gain put me right over the edge)...and was very miserable in general. The decision was easy for me, since I already have two kids and had my tubes tied years ago. If the doctors think that is the way you need to go anyway I say just do it. If you are lucky they may be able to do it vaginally and the recovery time can be as little as 6-8 weeks. It was uncomfortable, but not unbearable and I really wish I had done it a lot sooner. Take care and good luck, Donna.
 
Hi Kim

I suffer with PCOS too and I have read about your battles with PCOS and depression. I am sorry you have felt so awful! Reading about what you have had, it's little wonder!

I would give the Lupron a shot for a few months. Sometimes it is amazing how much better one can feel when all that oestrogen is turned off. As other posters mentioned, it can have side effects so why not just do three months and see how you are travelling?

I don't know what your eating situation is like, but loads of fibrous vegetables and protein with each meal have helped me to feel much better.

good luck
Liz N
 
Kim, my neice who is just your age, had a complete hysterectomy and part of her bowel removed due to endometritis a few months ago. She has healed amazingly but getting her hormones just right has been tricky. She was back doing genntle yoga within a few weeks and now a couple off months out is going like gangbusters. I can ask her to email you about her experience if you like. She had a dreadful time prior to the surgery and says it's ninety percent better. She also has Lupus so that factors in. I don't think she has any regrets but she's still trying to get just the right blend of hormones and her immune system has flared recently. I wish you well whatever you decide!
Bobbi http://www.handykult.de/plaudersmilies.de/chicken.gif "Chick's rule!"

Maturity is the ability to do a job whether or not you are supervised, to carry money without spending it, and to bear an injustice without wanting to get even.

-Ann Landers
 
Question for Liz...

Hi Liz - do you have an opinion on Prometrium vs. Provera to induce a period?

I was on Prometrium last year and had terrible side effects. I couldn't even finish the prescribed amount. Now my doctor wants me to take Provera, but I'm nervous because of the bad experience I had on Prometrium. I took Provera years ago and don't remember any problems, but I don't want to be so miserable again like I was with the Prometrium.

Hope Georgia and Sarah are doing well!!:*

Erica
 
RE: Question for Liz...

Hi again everybody, and again thanks for all your replies. It really helps me to know that I have some catheite sisters going through the same things I am. Sometimes you just feel all alone, and like nobody understands you, that you are just "out there".

Bobbi: I would love to be able to talk to your sister (or was it your sister in law?).

YOu are all wonderful, and the advice and stories you have shared has helped to ease my mind a bit.

Kim
 
RE: Question for Liz...

Hi, Kim. She's my neice, Tina and she's four years younger than I. I emailed you her email addess and said four months but that's not so! If anyone stumbles across my brain, will you please send it back to me? :)
Bobbi http://www.handykult.de/plaudersmilies.de/chicken.gif "Chick's rule!"

Maturity is the ability to do a job whether or not you are supervised, to carry money without spending it, and to bear an injustice without wanting to get even.

-Ann Landers
 
RE: Question for Liz...

Hi Erica, what is the actual drug that is in Prometrium? I know exactly how you feel - some types of progesterones, I just cannot handle at all!

The best thing you can do is take any sort of progesterone with food. The other option is trying natural progesterone which comes as lozenges/cream - some gynos don't like it, but it eliminates so many of the side effects from taking oral meds.

I have had some really nasty cycles since Georgia and I started off taking a couple of months of a high estrogen-high progesterone pill and have titrated it downwards really quickly - I am lucky though that I can get what I need off the shelf and I can phone my gyno to discusss it.

The other thing I am doing is the Leanness Lifestyle. You eat a lot more protein and fibrous veggies. Although I haven't lost a significant amount of weight, I am feeling so much better.

Hope Kelly is doing well too! Sarah is at school this year!

Have you ordered the Hardcores. I ordered them all!

Great to hear from you again,
Love from Liz :)
 
RE: Question for Liz...

Thanks Liz.

I don't know much about it, but I thought that Prometrium is a more natural form of progesterone while Provera is synthetic. I could be totally wrong. I'll ask the doctor about the lozenges/cream. I had to use suppositories when going through infertility treatments years ago, but really I'd just like to get the hysterectomy and be done with all of this hassle!

I'm glad that you are feeling better with the Leanness Lifestyle - I'll have to look into it.

I did order the Hardcores - I can't wait to get them!

Take care!

Erica
 
Not Liz, but Erica......

I am currently taking Provera to start my period and I have no side effects whatsoever. I usually lose all my cravings for PMSy type foods and lose weight while on it. I don't know anything about the Prometrium. Try the Provera, it does work and causes no side effects that I am aware of.

Hope that helps you some!!:D
 
Hi I am 49 and had a Hysterectomy when I was 35. I had adhesions and benign tumors attached to my intestines and everything else they could reach. My Dr did leave me the better one of the ovaries. I have never had a diagnosis of PCOS but suspect I am a candidate. The hyst was the best thing I ever did for myself and wish I had done it sooner. People could tell by looking at me that it was my time of month. I also thought the daily pain was normal as I had been told that for so long. NOT! Even the day after surgery I had less pain. (I had to have a full incision back then) Hope that helps. If I had to do it again I definitely would
Don't ride faster than your guardian angel.:D
 
Thanks Annette...

Thanks so much for sharing your experience with me. That would be awesome if I had the same effects as you - losing the cravings (and any weight) would be wonderful. I have an awful time with sweets.

Erica
 
I am 35 and just had a partial vaginal hysterectomy in December because of a endometrosis but actually found out I didn't have much endo this time but my uterus and cervix were prolasped and I had an enlarged uterus and adendomysis. It's taking a long time to heal and my stomach is HUGE although I haven't gained any weight but I think when I'm all through the healing process, I will be very glad. I was at peace with this whole thing although it was a kind of sudden - I knew I would eventally have to have one, I just thought it would be closer to 40 (or I was hoping it would be anyway). I wouldn't have wanted my uterus to fall out though so thankgoodness . . .

I'm not on hormones since the ovaries were left, but I have heard that if you are going to take hormones, to wait 3 months after they hysterectomy before starting them. My mom had a hyst. at age 45 and is on hormones. I'm trying to talk her into going on the natural ones (a patch I believe?). Next month I'm going back on natural progestrone cream - something I started to take this fall with the advice from a pharmacists.

I will tell you this . . . from everyone I have spoke with there has not been ONE person who has said they wished they hadn't. I also have a WONDERFUL message board for you to visit - www.hystersisters.com - it is THE BEST PLACE to go to!!!!! It has been a lifesaver to me so I highly recommend it.

Good luck, Rachelle
 
I am 30yrs old, have had PCOS since forever. I've had 2 surgeries so far. Last year was my worst year ever, hair loss like crazy, weightgain depression, acne, skin tags, high blood pressure all of it. My doctors wouldn't take me serious and didn't think I needed meds, even though I current have 3 cysts right now and a string of pearls around my ovaries, so I stop going to the mom and pop gynos and will start going to a womens center, this particular doctor is an endocrinologist/gyn. I have helped myself for most of the year taking like 15 herbal pills a day faithfully.

Saw palmetto; vitex w/ dong Quai; black current oil, Evenining Primrose oil; Borage Oil; fish oil; vitamin c; potent female Solgar’s Female Multiple Tablets - Chromium, B2,3,5,6, milk thistle, magnesium, zinc. Anyway, I have an appt. w/ the doctors this summer and even if they do a blood test and see that I am insulin resistent and all the likes that come along w/ PCOS I wouldn't stop taking my herbals for their meds. I'm doing great, I have good days and bad days but doing it naturally I feel is working for now. I realize that your situation is different from mines but I thought this could be of some help.

This is a pretty cool site that has info for you and a good message board:
http://www.soulcysters.net/

http://www.womentowomen.com/LIBpcos.asp?id=1&campaignno=pcos&adgroup=adgroup1&keywords=pcos

http://forums.obgyn.net/pcos/

Edited to say, please exhaust all your options before finalizing the hysterectomy. Sometimes there are other ways but doctors like someone else said are not very flexible.
Good luck.

Kat
 
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