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Total LAVH for endo, progesterone, no libido and still having symptoms? Total LAVH for endo, progesterone, no libido and still having symptoms?

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  #1  
Unread 08-12-2010, 01:54 PM
Total LAVH for endo, progesterone, no libido and still having symptoms?

I had a total LAVH two years ago, when I was 24, because of severe endometriosis. (Already had a bunch of laps, endo/adhesions would regrow within 6 months, like clockwork.) Ended up with an adhesion removal lap six months after that, but they used LOTS of adhesion barriers, which seemed to keep the immediate ones from forming. It's been two years.


But I have NO IDEA what to do with HRT! I was on progesterone since puberty because of the endo (10 weeks for it to metabolize, not the standard BC 12 weeks) and I've ended up having to take it post-hysterectomy. My gyn swears I shouldn't have symptoms, but let me tell you, about week 9 of the injection, I start having severe cramping in that old familiar area, and VERY SEVERE mood swings like I used to -- weepiness, upset, wanting people to console me... (I even checked with several psychs to make sure I don't have a mood disorder -- nope! They say it must be hormonal!) Goes away as soon as I get the shot of progesterone, and it's cyclical.

My doctor has been great (endo surgical specialist) but I know there are other doctors who believe in "residual" endometriosis. (My ovaries showed signs of PCOS, as well. Which is to say, they were a mass of cysts.)


Compound that with the fact I have noooooooooo libido whatsoever... tried Testim (1% 50mg) and sublingual testosterone (2mg) which seem to help a little for a few days and then stop being effective. I've also been prescribed the compound testosterone vaginal cream, but I've been having a heck of a time trying to find anywhere that can fill it! I was always pretty, ahem, active (maybe due to all the endometriosis and sex hormones in my system!) so being basically asexual is driving me nuts.


I also tried Wellbutrin, which did seem to boost my energy levels, but after about a week, I'd get awful migraines. (Tried again several times, dropping the dose lower each times, but after a week, migraines. I know it can be a temporary symptom, but too severe to endure!)


Hystersisters was a great resource pre-op but honestly, I think that was the easy point! I found out I need the most help NOW -- it feels like no one else has been through this, like I'm some bizarre patient that shouldn't exist. Anyone out there? Advice? Coping suggestions? Simple commiseration?
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  #2  
Unread 08-13-2010, 03:34 AM
Re: Total LAVH for endo, progesterone, no libido and still having symptoms?

Hi Sorry you are having so much trouble. Unfortunately, with a history of severe endo, using HRT to treat menopausal symptoms is much more complicated than it is for those of us who haven't had endo.

First... I have never heard of progesterone injections. Are these natural progesterone, or some sort of progestin like depo Provera? Progestins behave very differently in the body from natural progesterone. They stay as progestins, and help keep any remaining endo from re-growing, but they do NOT address menopausal symptoms. Natural progesterone, on the other hand, can be converted in the body to testosterone and estrogen. In women with ovaries, it can sometimes provide symptom relief; however, in women without ovaries, it is generally not able to do that.

I'm also confused as to why your doctor would prescribe testosterone to someone with a history of PCOS. Have your testosterone levels (free and total) been tested since your ovaries were removed? Women with PCOS continue to have PCOS after their ovaries are removed, and may still have too much testosterone; adding more will not help. If you are truly deficient in testosterone, though, then any compounding pharmacist will fill the prescription for the vaginal cream for you. If you don't know where there is a compounding pharmacy near you, you can go to www.iacprx.org and use their locator to find one.

For those of us without endo, the tried and true procedure for balancing our hormones after our ovaries are removed starts with estrogen-only HRT. My bet is that your doctor won't give you that considering your endo history. If that's the case, you're kind of stuck... you're not likely to find relief from your symptoms without it.

I'm sorry I don't have more encouraging advice for you. If you're having a lot of trouble with hot flashes, you might try Clonidine or Belladonna or Effexor, since those are non-hormonal and won't encourage endo regrowth.

s,
-Linda
  #3  
Unread 08-13-2010, 06:29 AM
Re: Total LAVH for endo, progesterone, no libido and still having symptoms?

I had a LAVH w/ovary removal 3 weeks ago due to severe endo and the one ovary I had left was covered in adhesions and stuck to my intestines and had a cyst on it that would not resolve. I'd had surgery less than 6 months prior for endo removal and cyst removal. My doctor has me on an estrogen supplement only and is not concerned with the low dose of estrogen stirring up any endo that may still be in there. I'm a bit confused as to why you would not be on some form of estrogen as well.
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  #4  
Unread 08-13-2010, 08:40 AM
Re: Total LAVH for endo, progesterone, no libido and still having symptoms?

Hi

I just want to agree with (((Linda))) that you should have your testosterone levels checked before getting that testosterone script filled.

It can take a while for the PCOS woman who is used to higher levels of testosterone to adjust to life on "normal" levels. On one hand, you do give up a higher sex drive . On the other hand though, you also give up other unwanted side affects .

Have you seen an endocrinologist concerning your PCOS? It is a disorder of the endocrine system, and often involves other hormone imbalances such as insulin and thyroid. It is impossible to balance the HRT if these other hormones are not brought under control first. When you add to that, your endo concerns, I would think it would be very important to see a hormone specialist (Endocrinologist).

Keep us posted.


Kay
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