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Need advice (endo, TLH BSO age 21) Need advice (endo, TLH BSO age 21)

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Unread 04-26-2013, 04:01 PM
Need advice (endo, TLH BSO age 21)

I am 21 years old an scheduled for a total laparoscopic hysterectomy and bilateral salpingo oophorectomy on April 29th so like in 3 days . I am having this cause of endo that has gone uncured for over 6 years despite many attempts and lasering to fix . I am worried cause of such young age going into surgical menopause and the side effects . I can't seem to find anyone close to my age who has also gone thru this decision . Anyone out there have any suggestions tips opinions anything please ? My family is torn on this as am I and I am running out of time to find a soloution I want this surgery and think it will be ok but my fam thinks differently.
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Unread 04-26-2013, 04:26 PM
Re: Need advice

I'm 33 and had 1. Dr gave me an estrogen shot while in surgery and that helped. It isn't a lot of fun. 1 thing I wish I'd done , have them check ALL of your hormone levels NOW. So you have a baseline for what your normal is. Testosterone, free testosterone, progesterone, estrogen, tsh, free t3, free t4, cortisol. Everything. This surgery can affect thyroid and adrenal levels if our hormones get too out of whack. The bright side is we probably bounce back quicker at a younger age and just to let you know, I DO NOT REGRET IT AT ALL. No more pain
Unread 04-26-2013, 04:45 PM
Re: Need advice

You have such a great attitude. Sending a big
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Unread 04-26-2013, 05:06 PM
Re: Need advice

Have you looked into an endo specialist? Someone who will cut it out and not just laser the surface? I'm sure weiser can chime in and give you better advice.
Unread 04-26-2013, 05:25 PM
Re: Need advice

Has your doctor offered to put you on hormone replacement therapy? I wish you good luck. I'm having my surgery on the same day and also losing my ovaries.
Unread 04-26-2013, 06:37 PM
Re: Need advice

I am also 21 and having a total abdominal hysterectomy and bilateral Saplingo Oophorectomy on Tuesday in four days mine is also for endo we have did everything two laps birth control all but Lupron when it come to that or a hysterectomy I said do the surgery I also
know I am making the right choice I am married and my husband agreed but my parents thought I should try the Lupron I am also scared of the menopause at such a young age.
Unread 04-26-2013, 08:00 PM
Re: Need advice (endo, TLH BSO age 21)


You are very young to be having this surgery. From what have read on this site, a hysterectomy is not a cure for endo. Have you seen an endo specialist? You may want to get another opinion on your condition.

Unread 04-27-2013, 01:28 AM
Re: Need advice (endo, TLH BSO age 21)


I am so sorry for all you are going through and my aches for you. I know this can be difficult at your age since your peers won't quite understand what you are going through. I had my own hysterectomy many years ago at the age of 25; however, I did not have an oophorectomy.

Not one of us can tell you to have a hysterectomy and oophorectomy at the age of 21. We are not in your shoes--not even someone who is currently 21. And none of us, including yourself, can know what life will be like for you in 10, 20, 30 years. But based on my experience and my many years of working with women who have had hysterectomies and/or who have endometriosis, I would strongly encourage you to hold off and explore alternative options and/or find a true endometriosis specialist. I would hate for you to be yet another women with a load of regret on her shoulders because she gave up so much so young and then found the hysterectomy did not render her pain free as she had hoped.

I cannot in good conscience advocate any woman in her 20's have a hysterectomy and/or oophorectomy for endometriosis unless she knows several things and would also recommend counseling before heading into OR. The most important thing to know is that neither a hysterectomy nor oophorectomy cure endometriosis. "Endometriosis is an extra-uterine disease, and the aim of treatment should be to remove all the extra-uterine disease while retaining all the healthy tissue including the uterus and ovaries," (BJOG). "Patients are sometimes misled to believe that the only long-term solution is removal of all female reproductive organs - a myth. Endometriosis is not cured by removal of the reproductive organs. This dangerous misconception in the medical field is responsible for countless, needless hysterectomies performed each year," (Endometriosis). The key for treating endometriosis is the expert excision of the actual implants by a skilled surgeon. As long as implants remain, so can symptoms and pain; endometriosis does not require a uterus or ovaries to survive. A member just posted a new thread today in the Endometriosis Support forum. She has had a surgery every single year since her hysterectomy and oophorectomy and is still in pain today. You can read her thread here: Endo worsening at warp speed.

You also need to be very aware of the health risks involved with no or low estrogen at your age. Hot flashes will be the least of your concerns--they are uncomfortable but aren't a health issue. On the other hand, with no ovaries you face very real risks for heart issues, osteoporosis, thinning tissues which can affect your vagina and thus sexual health, problems with your bladder, and mental and emotional concerns. "Other health risks associated with the loss of estrogen include increased risk for colon and ovarian cancer, periodontal (gum) disease, tooth loss, and cataract formation," (Premature Menopause). You should read these articles as well:

Ovary Removal or Not? Study Suggests - Keep Ovaries
Menopause: Effects of Low Estrogen Levels

There are also health risks with a hysterectomy. Not all women have one and live happily ever after. I was one of the women who got to be a statistic with several complications which took a toll physically, mentally, emotionally, and financially. Thankfully, most women won't go through what I did, but we didn't expect all those things to happen to me either. In fact, most women who end up with complications don't anticipate having them.

A hysterectomy also ends all hope of conceiving which can be especially concerning for a women in her early 20's. Though you may feel today that you are okay with losing your fertility, your heart may feel differently a few years down the road. Delayed grief and regret has hit many, me included. We all change with time. Who we are at 30, 40, etc. is not who we were at 21, but our lives are impacted by the choices we made at 21.

If you are not 110% sure a hysterectomy is right for you, hold off. If you have not weighed your pros and cons more than once, hold off. If you have not consulted with a specialist, hold off. You cannot turn back the hands of time and there is no undoing a hysterectomy. While HRT may help with estrogen issues, it is not the same as what your ovaries produce, some women can't find the right dose or delivery method, and with endometriosis may not be an option.

I know this isn't what you wanted to hear, but you are facing a huge decision that will impact you for the rest of your life and may not even solve the problem for which you are having the surgery.

Please, take some time to get some expert medical advice--find someone other than a general OB/GYN. Typically, those doctors use methods which do not allow them to remove all the implants. Requiring repeat surgeries is a clue that your surgeon could be missing implants and/or is using a method which is not completely removing them. Also, consider some counseling before going any further. And remember, your family loves you and that is why they are torn.

No matter what you decide, we will support you. You will also find women who understand this condition over in our Endometriosis Support forum. There are also links to articles there so you can learn more about endometriosis.

Unread 04-27-2013, 02:05 AM
Re: Need advice (endo, TLH BSO age 21)

I just wanted to add that I had a hysterectomy about a year and a half ago, and am now having a return of endo symptoms. I am praying that is not what is happening, but realistically, it very well could be. The longer the pain goes on, the more I think that is the case. And I do regret having a hysterectomy, despite the fact that I had other concerns that were being addressed by having one. I never had children, and I never will. That choice is gone. It weighs heavily on me, despite the fact that I did try to have children with no luck, so maybe it would never have happened anyway. And surgical menopause at such a young age is HARD, trust me! Whatever you decide, the women on this site (me included of course) will be there for you.
Unread 04-27-2013, 02:15 AM
Re: Need advice (endo, TLH BSO age 21)

I have gone to 3 different doctors am now at a specialist who is doing the surgery . I've had endo lasered out and scraped my uterus 3 times now . Tried birth control for 2 years. Did injections luperon and that did not help. I've talked to a genetic counselor about this issue because I have also tested positive for brca2 gene mutation and have a history of ovarian cancer in my family. I just recently (feb. 4th) had a bilateral mastectomy. And that was to a very difficult decision for me but I had fibrocystic breast disease and with such a high risk I has for breast cancer I chose to do it . This has been a harder chose the hysterectomy for endo I knew was the last chose I had and still I went to multiple docs to just Make sure and I ended up at a high risk specialist doc and he has been amazing . Gave me the option to keep ovaries or not . But I had a aunt who did hyst kept ovaries and got cancer and ended up dying and if she would of done oophorectomy then she would still be here . So I decided to do it . I am confident I am making right decision. It has taken me many years to reach this point and be ready to do this . I know things won't be easy for me from here on out but I know inside I will feel better . Thank you all so much for your replys supports and opinions.

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