HRT or hysterectomy- catch 22

Hi Ladies,

I"m getting very close to taking the plunge and getting a hysterectomy. I'm tired of the irregular bleeding from fibroids and adno. I also have endo and have had all of one and most of my other ovary removed. I am now 42 and started Perimenopause in my late 30's and have been on the Vivelle patch since then(which was before my second ovary was removed.)

I'm miserable with my periods, which I assume are from taking HRT. I believe that if I went off HRT, I would be in full blown menopause. I do not want to go that route. My mom went through menopause at 40 without any HRT even and now has heart disease and advanced osteoperosis.

I'm on the 75 patch and I still have symptoms of low estrogen. I would have loved to stay on 1.0, but it made my bleeding even worse. I had severe symptoms on .50 and don't want to decrease my .75 dosage. I don't function well without HRT... I have brain fog, fatigue, itchy skin, anxiety, palpitations and many other unbearable symptoms. For me 42 is too young to be without hormones. I feel I need them. But, they're causing me to bleed and since I have adno, but bleeding is out of control. I feel like my uterus is an alien that is taking over my body!

So, do I have a hysterectomy so I can stay on hormones or do I go off hormones and see life as I know it change.

Hi Jayhee,

It is very difficult to cure adenomyosis, unless it is in the very early stages. Most often, a hysterectomy is the only way to cure it. Have you tried options other than the HRT you are currently using?

If I understand you corrrectly, you have already had both ovaries removed? Have you gotten second and third opinions from Drs who specialize in treating endo? While a hysterectomy will take care of the adeno, fibroids and bleeding, it will not take care of the endo.

You may want to speak with a Dr about bio-identical hormones. Here is a link toHormone Jungle Articles. It is a good place to begin to learn about the different kinds of hormones. There is a lot of information there so you will want to sit down sometime with some tea and read through it. I might help you gather some questions together to ask your Dr.

I hope you find the information you need. If you have any more questions, we are here to help you try to find answers. If you should decide on a hysterectomy, we will be here to help you through your surgery and recovery too.

s,
Kay

Hi jahee I understand you feel caught in a tough situation, not sure which way to turn.

I'm wondering ... are you on any progesterone, or synthetic progestin, with your Vivelles? (And is that Vivelle dot or the old Vivelle patches?) You see, unopposed estrogen tends to make things like endo, adeno and fibroids worse. Most ladies who have their hysterectomies for endo, for example, often have both ovaries removed at the same time and are not allowed any estrogen for a period of at least several months (sometimes forever ).

I guess I'm surprised your DR would prescribe estrogen, especially unopposed (no progesterone) estrogen, given that you still have a uterus, also because unopposed estrogen is known to substantially increase your likelihood of developing endometrial (uterine) cancer. Given that you're having problems with bleeding (and, btw, just estrogen will not normally cause you to have periods)... have you had an endometrial biopsy recently?

JMHO, but if I were in your situation, I would think about getting another opinion from a DR who treats a lot of endo patients. I would consider having the hysterectomy, and, most of all, I would consider getting on some progesterone right away, with or without the Vivelle dots.

I agree, 42 is very young to be without hormones. Unfortunately, ladies with endo are in a very tough spot. Even after removing the ovaries, uterus, and all visible endo, it is possible for the endo to return if you just use estrogen and don't at least oppose it with some form of progestin. My bias is towards the bio-identical HRT's, so I favor natural progesterone over the synthetics (which seem to be associated with a higher incidence of breast cancer, at least in older women who take them longer term), just as it is towards the bio-identical estrogens (including the estradiol in Vivelle dot). In general, I think it's better to try to replace what the body would be making on its own rather than adding drugs the body needs to break down in the liver... but the rub is, for ladies with endo, the body was already messing up on using its own hormones. What then?

I really feel for you, you are in a tough spot. Best wishes with whatever you decide to do.

s,
-Linda

Linda and Kay,

Thank you so much for your replies. You both are very knowledgeable and I have learned a lot from reading your replies to other posts.I know that this is a tough question and there are no easy answers.

Kay, I still have a very small portion of my left ovary left, but it was described as a "nubbin" of an ovary. I know I'm not ovulating anymore and haven't for awhile.

I am seeing a specialist, a reproductive endocrinologist, whose focus is fertility and menopause. I'm concerned that she is close to retirement age and wonder where I'll go next. She's well known and well-respected in the region.

What's the best way to find an endo specialist? I live near a major city in the northeast, so it shouldn't be hard. I'm just not sure where to start. Is there a way to get a doctor recommendation on this website or through a private message?

Linda, actually, I am also on prometrium on days 1-13...forgot to mention that. I also take compounded sublingual testosterone 2.5 daily.

I wonder what happens with endo after everything is taken out and you stay on hormones. Does it still cause pain and/or invade your bowel and the remaining scar tissue?

I read recently that endo is the disease of denial. You think it is going to go away, but it doesn't.
I thought my endo went "away" when I hit perimenopause. Then last year, my periods got painful and wacky again and I realized I have another endometrioma and my ovary was taken along with it...just when I thought I'd been fine.

Thanks so much for your help. I'm going to get some second opinions.

Jayhee,

Some women recommend seeing a GYN/Oncologist for serious endo issues. I don't know what city you are near, but maybe you could see if there is one there? Please don't let the "oncologist" part of the title scare you, they are just more specialized.

S,
Kay

	Quote:
I wonder what happens with endo after everything is taken out and you stay on hormones. Does it still cause pain and/or invade your bowel and the remaining scar tissue?

That is a hard question to answer. I think alot of it depends on where the endo is located and the depth of the endo and if the doctor is able to successfully remove ALL the endo.

When the endo is located on the bowels or bladder, it is much more likely that the endo can not be completely removed. I believe even when everything is remove as with a hysterctomy, if there is any remaining endo, it can continue to grow and spread and unopposed estrogen may speed the process. Some women still have endo pain even after a hysterectomy. This is why a hysterectomy is not always a "cure" for endo.

There are many women who have found relief from their endo after a hysterectomy. I had my hysterectomy 4 years ago and I have not had any further problems with my endo since my hysterectomy. I did use many precautions that may have helped in having a successful outcome such as having my ovaries removed, not using any form of estrogen for the first year, I also had 3 months of lupron therapy after my hysterectomy. I did have to have a urologist help with my surgery to remove part of my bladder that was covered with endo. It was recommended to have an abdominal hysterectomy verses a vaginal one. That way the doctor is able to visibly see and remove more of the endo. I also use progesterone with my estrogen. I still know there is the chance that I may have problems even years from now, but I feel fortunate that so far I have been free of my endo pain.

Here is a link that may be helpful in finding an endometriosis specialist.

Endo specialist

I hope this helps.