Endo, Hyster & HRT!! HELP!!

I am looking for info from other sisters who have had a Hyster due to Endo.

I have a surgical consult on 12/17 to schedule my surgery.

I was told that I would have to wait 3 months before starting HRT.

I am weary about HRT and Estrogen as I do not want to go through this surgery (already did Lupron & Depo-Provera) The Nightmare and the Sequal as I call it. To only have HRT bring it back.

What success, have you had without the HRT and what do you use to alleviate the menopausal symptoms.

I was on Lupron which puts you in a menopausal state and the side effects were horrible.

Any and all info is appreciated..

Awaiting Castle Date!!!


Stacy

Hello Stacy

I had my surgery Sept. 30/02 and kept one ovary and my cervix. I had the surgery due to severe endo and adenomyosis.

Some cells were missed on my cervix so I now get a monthly staining or mini-period. It is very light and doesn't require pads but is still there. If you are keeping your cervix make sure you talk to your doctor about the possiblity of this happening.

During the past year, even though I still have 1 ovary, I experienced alot of menopausal symptoms. Anxiety and hot flashes were the worst. I started Estradot patches in Sept. of this year and had 2 months of hell! It flared up my endo and my fibrocystic breasts. My family doctor took me off the patch and put me on Zoloft (SSRI) to help instead. It has worked wonders for me and I personally won't risk trying HRT again.

Hope this helps!

T-L

Hi T-L,
Well you are the first person that I have heard that had a hyster for Endo and KEPT an ovary.

I am afraid of any form of Estrogen. I know a Hyster doesn't guarantee that the Endo is gone for good but it is my only option left. I don't want to increase the chances by putting Estrogen back into my system.

Dr. said that I need HRT as I am only 35 and it is too soon to completely deplete my body of Estrogen. So I will discuss this with him further. I have a surgical consult on 12/17 and surgery will probably be right around New Years.

I hope it will be a positive start!

Thanks,
Stacy

Hi Stacy,

I was only 32 last year when I had my surgery and so I asked to have one ovary left in. My mother passed away from breast cancer so I didn't want to risk taking HRT.

Taking Estrogen after your surgery may flare up your endo just as easily as keeping an ovary. My endo has been fine until I added Estrogen. Now that I'm off my pain is subsiding once again.

I talked to 2 gynos prior to my surgery. My surgeon was very conservative and only wanted to remove the problem parts, leaving my cervix (for structural support) and one ovary because of my age.

The other gyno was very radical, he wanted to remove absolutely everything problem or not.

I had severe adenomyosis as well so a lot of my pain is gone with my uterus.

Let me know if you have any questions......glad to help!

T-L

T-L,
Both my Dr.'s agree that it "All" must go. Exactly what that means I will find out on the 17th. But I was told that there is no way I can keep my ovaries.

I was diagnosed with Severe Stage IV Endo.

Honestly, when the did the Lap, had I known then what I know now I would have had them take it all but no one knew it was as bad as it was.

So after the 6 month Lupron Nightmare and a 6 week Depo-Provera Nightmare Sequal. There isn't much left to do.

I am just concerned about the HRT. Mostly the Endo. So I am looking for alternatives to the Estrogen.

I want this to be the LAST surgery, as we all do.

Thanks!

Stacy

Stacy:

Keep in mind that your experiences with Lupron and Provera may not mimic exactly the experience of a surgical menopause. Blocking all your estrogen receptors is a bit different than not producing estrogen, progesterone, and testosterone.

You may find that you're feeling better than you expected post-op. Also, a lot of doctor will put their endo patients onto a progesterone (hopefully NOT a progestin, like Provera, since your experience was so negative) after surgery. Prometrium and/or compounded progesterone, may help to suppress any remaining endo; for me at least, it was enough in the HRT department for some months post-op.

You also will want to ask about some form of vaginal estrogen. Vaginal dryness is a problem for most of us who stay off systemic estrogen, and the doses are usually low enough, staying in the vaginal tissues, to be less likely to trigger any remaining endo.

Most of us take supplements: at least calcium/magnesium for bone health. Many of us also take evening primrose oil (helps with inflammation) and multi-vitamins. Ask about having a DEXA scan before your surgery to establish a baseline; bone density can drop dramatically in the first year or so estrogen-free.

I hope you finally get some relief with your surgery. Mine did help enormously; I was able to go onto low-dose estrogen with a patch formulation without too much return of my endo. It's there, but at least now it's background noise and not taking over my life any more!



Audrey

Hiya Stacy and all !

I am now a princess.

Just to let you know, my Dr got the word from me on lupron, and is going to put me on a prometrium for endo suppression next week, one week after surgery. Seeing as how my ovaries were in his words "already shot" he figured I'd been perimenopausal for a while. I have only had mild hot flashes since my lupron wore off, and those no big shakes, just a shrug off my overshirt, drink a cup of soy milk and carry on.

Best of all I feel A WHOLE lot better. Concensus of opinion was that if I had waited or done anything daft like Aroma Therapy rather that go directly to surgery, I'd have been looking at cancer. And this is only 4 days down the line, my pain pill use mild, so let me say tell the doctor loudly and firmly NO depo NO lupron and make sure he gets the message. I got a story for my castle you ladies won't believe......but let me say my surgeon was great, my surgery went along swimmingly, this stands out as one of the best decisions I ever made.

I was on Lupron myself for 6 months, and there is NO comparison to the symptoms. I cannot take any HRT for 4 months, and 3 weeks into my post op, I haven't suffered any symptoms from my hysterectomy. Within Days of my first Lupron injection I was miserable.

I hope this eases your mind in that true menopausal symptoms are different than those after taking Lupron.

I am glad you posted this question.

I am six weeks post-op from a TVH/BSO for Endo. I saw my doctor and told him I don't want to go on HRT. He said I only need to avoid it for a couple of months for endo. Has that been other people's experience? I thought the longer I could go the better.

So far, I can handle the mild hot flashes I had. I am not too moody or depressed. If I was, I would try wellbutrin.

Has anyone else decided to stay off HRT for longer than a few months because of endo?

Thanks,
Danette

I too am to refrain from taking HRT due to the endo, DR wants to wait 4 months since there is still a patch of endo on my right side.