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Facing surgery again, concerned about surgical menopause at 27 years old (endo) Facing surgery again, concerned about surgical menopause at 27 years old (endo)

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  #1  
Unread 10-26-2010, 11:46 PM
Question - Facing surgery again, concerned about surgical menopause at 27 years old (endo) Facing surgery again, concerned about surgical menopause at 27 years old (endo)

Hi all,

I had a LSH in August 2008 for Endo/Adeno. I still have both of my ovaries. However, now there appears to be a 2 inch chocolate cyst on my right ovary that is causing me a lot of pain, nausea, etc. The left side is hurting again, too. I go in for a follow-up u/s on Thursday to see if it has grown. Crossing fingers for good news, but my symptoms are getting worse.

My concern is that the doctors will likely suggest removing my ovaries (they already have alluded to it). At 27, I'm not keen on doing this. I don't like the idea of being faced with the choice between artificial hormones or unbearable menopausal symptoms.

I'm trying to do the cost-benefit analysis in my head. Specifically:

Are recurrent cysts and possible return of endo worse than surgical menopause?

What are the risks for young women taking HRT to counteract surgical menopause?

What are the health risks of too little estrogen?

Has anyone tried alternative therapies for surgical menopause, and did they work?

I'm frustrated and a little scared (again). In recent weeks I've been in near constant pain, with nausea on top of it. It's affecting my mood, my libido, and my work. I'm very fit and usually quite active, but now I'm exhausted all the time and can't seem to get motivated to do anything.

Please share what insights you might have for me. Thanks so much. This site has been such a needed place of support for me through this whole process. You all are
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  #2  
Unread 10-27-2010, 08:07 AM
Re: Facing surgery again, concerned about surgical menopause at 27 years old

Hi

I'm so sorry you have so much to decide at such a young age. However, maybe we can help you find the answers you need to make an educated decision.

1)Are recurrent cysts and possible return of endo worse than surgical menopause?
I can't address the recurrent cysts. However, having your ovaries removed does not guarantee that endo won't return. If there is even a tiny speck of it left, it can regrow even without ovaries. Many Dr's won't prescribe ERT, at least for a while after having the ovaries removed if you have endo, to give any remaining "seeds" of endo time to die off. Some Dr's however, will prescribe estrogen with some progesterone. Many women have had endo return in spite of treatment. Is there a Reproductive Endocrinologist available for you to speak with concerning this issue? They are the experts in this area.

2)What are the risks for young women taking HRT to counteract surgical menopause?
There are many choices for HRT. Lots of women use bio-identical hormones, meaning the hormones are identical to what your body makes. If you have a compounding pharmacist in your area, you could make an appointment (should be a free consultation) to speak with one about your personal choices and health risks. We are all different in this area.

3)What are the health risks of too little estrogen?
Estrogen provides protection for bone and heart health. It also is used by the brain and many other body functions. Here is a link to Too Much/Too Little so you can see what some of the potential side affects are.

4)Has anyone tried alternative therapies for surgical menopause, and did they work?
If by alternative therapies, you are referring to OTC products that do not actually contain estrogen, then no, they do not work well for the woman in surgical menopause. The reason being is that they usually contain one of the phytoestrogens,which your ovaries use to make estrogen. Without the ovaries, your body does not have this ability. Some women have found mild comfort with some of the products, but they are not a substitute for the real estrogen that your body can use efficiently.

There are many women who do well, and even better on HRT, especially if their ovaries were diseased. It is important to find a Dr who is very knowledgeable concerning surgical menopause and HRT. Again, this is where a good compounding pharmacist can be worth their weight in gold (in my opinion ) My pharmacist helped me find a Dr who works well with the pharmacist to provide me with what I need.

Here is a link to our Hormone Articles which will contain information that you will find helpful.

Let us know what you decide and if we can help you find more answers.


Kay
  #3  
Unread 10-27-2010, 10:01 AM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

Sorry you have so many problems but let me say a few things about your choice... I just had a "volunteer" hysterectomy because of 1 month long period.. I ask for the surgery and thank God I did. They found cancer in my right ovary. Now with that said, if I had a choice in fighting hormones and fighting cancer with chemo, I would choose hormones.. I understand that is some strong words but relax, educate yourself like I am trying to do now LOL .. these ladies on this site are great and helpful!
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  #4  
Unread 10-27-2010, 10:44 AM
thank you for the links and info

Thank you so much for the info and the links! I know I can always count on the lovely ladies here for support, kind words, and useful information.

I will do some reading. As far as a reproductive endocrinologist... unlikely. I live in a small town. I generally see the GYN for tests and ultrasounds, and then send the records to a specialist. I'll likely be going to AZ for this next surgery. My GYN did say that bio-identical hormones were available, however.

With the reading I've done so far (which is not enough, I'm sure), I'm leaning toward leaving them in, and just having the doctor remove the cysts and any endo. It seems like I'm just too young to have the ovaries removed unless it's absolutely necessary. And like you said... even without ovaries, my endo can come back! How crappy would it be to go through all of the surgical menopause and HRT, only to have it come back AGAIN?

I'd like to hear from any women here (if there are any) who were in a similar position as me and decided to have the BSO. Are you glad you did it? Is HRT working well for you?

Sigh... Like many women here, I'm very frustrated. I'm trying to stay positive and strong, but it's hard when I can't stand up straight and can't eat without feeling queasy.
  #5  
Unread 10-27-2010, 10:58 AM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

Hi,

I could tell you my personal situation because it sounds similar to yours. I had a full hyst at 26 (I am 34 now) due to battling endo for many years. I had several unsuccessful surgeries and medications and for the most part could not get out of bed for about 3 years. There have been many challenges and unexpected side effects from the hyst and I have never really felt like “me” again and I have to come to realize that it will probably be a lifetime challenge. However, I still have to think back to the years that I spent bed ridden and having surgeries every year trying to remove endo that just came right back. And for the most part this is an improvement. There are more good days then bad in comparison to how I felt before. One thing I do wish though is that I had been more educated about the effects that come with a hyst, If I had known what I was in for I probably would have tried to see if I could have put it off longer. The doctor that did my surgery was also a expert endo specialist, so in hindsight I would have liked to see if I could get one last endo removal surgery from him before the hyst just to allow some more time.
So I would not rush into it; I would really really make sure you have exhausted all other possibilities, seen the best specialists you can – even if it means going out of state. I was always a self pay patient and sometime let that make decisions for me. Money you will eventually earn back. However if in the end a hyst is still your best option, just try to remember that patience is your friend! It will take time, trial and error to get balanced again. And there are a lot of women who feel good after a hyst with no ill effect; so there is always hope!
Good luck
  #6  
Unread 10-27-2010, 11:11 AM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

nogood, thank you for sharing your story. I am sorry you have struggled for so long, but it sounds like you try to find the silver lining. Hugs!

My hyst in 2008 left me feeling pretty good. I don't miss my uterus at all, and I had almost 2 years pain-free. But those darn ovaries! Ha.

I'll likely take your advice and have another excision surgery before deciding on BSO. I think you're right about exhausting all other options. I've just heard too many stories like yours, about not feeling like "you", and all the horrible side effects of BSO. I can get out of bed currently, even though I have constant low-grade pain. I guess it's just a matter of weighing the pros and cons, which is different for everyone. Maybe if I can just get this cyst out of there...

It is frustrating to have taken the time and money to see a specialist 1800 miles away, just to be back in this position two years later. I'll go see a different specialist this time, I guess.

Thanks!
  #7  
Unread 10-27-2010, 11:23 AM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

Yes it does seem like it’s the pesky ovaries that cause all the havoc! It is hard to really know if our Dr is a true specialist or not – I saw several who were supposed to be, but I still had instant re-growth. So on one hand who knows if it’s just our bodies or the Dr’s not doing a good enough job. I don’t know much about cysts and their re-growth pattern; but yes maybe if that was removed and your last Dr did a good job with the end removal. Then you could be good – at least for a few more years anyways, maybe longer!
  #8  
Unread 10-27-2010, 01:21 PM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

climberchick,

I had a TAH-BSO because of extensive endo, 3 years ago. I didn't know what I was getting myself into when I made the choice. Looking back, I probably would have still made the same choice. But, I was 35 at the time. I found lots of books to educate myself on hormones. I chose bio-identical hormones since I know I will be on them for years and years. My endo pain did return, but I keep it at bay with progesterone. At least now I am in control of the pain. No more horrible periods and pain! Hugs!!
  #9  
Unread 10-27-2010, 09:05 PM
Re: Facing surgery again, concerned about surgical menopause at 27 years old (endo)

For me (at 31) it was a quality of life issue. Yeah, getting the HRT settled is a major pain in the rear end and, yes, it can be somewhat costly. But, I'm not in pain from my ovarian cysts anymore. I'm off all pain meds and I feel like I got my life back.

Also, there's an article on bioidentical vs synthetic hormones here. There is a lot of conflicting info out there on HRT and it can be a little overwhelming at first and to make it more complicated - what works for me and the next poster may not work for you at all.

Knowledge is a great thing, and please don't take this the wrong way, but I know how easy it is to see the difficulties and discussions of women trying to find their balance and be discouraged when you're trying to make the decision. I would advise that you meditate on if you're willing to continue with the pain and possibly get a few more years by going the excision route or if you're done and you want them out. For me once that decision was made the rest didn't seem so overwhelming and intimidating.
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