Trying to make a decision

Hi ladies. I've been reading and reading and reading in regards to this decision. What a hard decision to make.

I have Endometriosis, Stage 3, Adenomyosis, and Uterine Prolapse, Sate 1 along with excessive and prolonged bleeding. My bleeding lasts 34+ days and over two weeks of that is extraordinarily heavy. I get really pale, weak and am freezing and cannot function. To give a better idea, I wear two pads, and a super plus tampon and soak through all of them from 20-30 minutes after putting them on. This is round the clock for just over 2 weeks of the cycle. The rest of the cycle is a 'normal' heavy period. I had a laproscopy on March 5th (my 4th I think) and it didn't help but slightly. I'm still bleeding 18+ days and the pain is still extreme. I am usually curled up in the corner of hte bathroom holding my stomach and crying.

Obviously, sex is non existant and has been for a while.

My doc who did the surgery in March said that my ovaries were engulfed in Endo as well as other parts. He said that if that didn't help, I might as well do a hysterectomy. I have been through several treatments - BC pills, Lupron, Depo Provera, etc, etc. So it isn't like this is the first treatment that I have tried.

I'm deeply worried on the libido issues afterwards. I guess that is my biggest worry. I know that sounds petty being that sex is nearly non existant now, but I am worried.

I am worried on the side effects of the HRT therapies since I most likely will loose both ovaries as well.

Can ANYONE tell me that sex does get better. That the surgery is worth is even if I do loose my libido?

I'm 28 today - Happy Birthday to me - and spent 4 hours in the bathroom this morning in the corner sobbing like an insane woman because of the abdominal pain. I know that my cycle is returning, it's only been 5 days since the last one left, but that is actually surprising because before the Lap, I only had 1 maybe 2 days between cycles.

I see a gynocological disorders specialist on April 26th for a second opinion and probably will stick with her because my doctor didn't want to talk to me at all about a hysterectomy after he mentioned it. He said that if I had questions, he'd "answer a FEW the MORNING Of the hysterectomy if I insisted". SO obviously that has me running away from him becaue I want answers NOW before I make this decision.

My Dh, 40, is begging for me to do this. He says that even if I never want sex again, he would be so thrilled to see me not in pain or bleeding like this anymore.

I'm also deeply worried about the recovery. We do have children, who are young. Dh only gets two weeks vacation a year, but one of those weeks we have broken up so that he is off holidays this year. THe other week we could use after the surgery, but after that, I'd be on my own unless I can get my youngest sister who is 17 help me out. But I'd pretty much become the one that needs to care for the children/house after about a week, or if I get her help, two weeks. Is that possible?? My children are quite young so that scares me and being that I do have a few of them that worries me greatly.

Please advise. I'm not sure what Im looking for. I guess others that think that this is right and that it will be okay afterwards. That it will be worth it. I am just so scared. I so badly wanted one more child, but during surgery he found that I was so badly damaged, there was no chance to get pregnant and when I saw the photos, I agreed.

But I'm worried on the libido issues and recovery. And what to do about HRT/NHRT or just going at this without anything. I'm also worried on how long the side effects like the crying and mood swings, hot flashes last. Do they ever go away?

I thank anyone and everyone that can offer anything to me. I'm sooo scared but this mornign as I was on the floor my husband begged me to please make a decision because he cannot keep watching me get worse like this. That broke my heart.

Thank you

(((Brenda))),
My heart goes out to you...you have soo very much going on and are soo very young It sounds as if you've been thru other treatments all to no avail in relieving your symptoms...
Endometriosis can be quite debilitating and unfortunately a Hyst is not always a definite cure:-( There are many ((women)) here who have experienced a great deal of relief in the pain & symptoms they suffer tho!!
Have you ever considered seeing an Endometriosis Specialist? They are very knowledgeable in the treatment options available and are more aware, as well as possess, the skill/technique & info needed to treat this disease more successfully...just a thot.

The concerns & fears you have are those many of us experienced prior to our own decision to undergo this surgery. One of my greatest concerns was the loss of sexual function. The first year & a half Post-Op felt as if it was gone forever. Intercourse was extremely painful & I had zero Libido <sigh> My ability to achieve an Orgasm was greatly diminished almost to the point of it not even being worth the time, pain & effort.
In my search to regain what I had lost, I learned about the benefits & success of Testosterone for these exact issues Post-Hyst. The use of it has completely changed these issues! The improvements were quite dramatic at first....I am 4 yrs Post-Op now and can say that for me, Intercourse is better than the Pre-Op days something I felt I would never be able to say. The way my body responds is *different*, for some, the loss of our Uterus & cervix can diminish that response. For those who experience Uterine contractions during an Orgasm will no longer but we still have our G-Spot, an area that Pre-Op I wasn't able to utilize. By becoming more attuned to my body & the way it responds has helped me greatly in this aspects...ways I probably would've never realized had I not had this surgery < I like to find some good in all things >

I urge you to research & educate yourself on this surgery, the risks it may carry along with the possible outcomes. Surgical Menopause can bring about a whole other set of problems, for some, worse than the symptoms that bought them to the decision in having this surgery in the 1st place. For some tho, the symptoms are minimal or controlled/relieved by the use of HRT < tho with Endo, it is most often contradicted for the first several months to help prohibit any implants, that may have been left behind, from becoming active & spread thru the use of what Endo feeds upon, Estrogen > There are 2 forums here that consist of women dealing with Surgical Menopause issues after this surgery. One is for women that use HRT and the other is for women who are unable or choose not to use it due to certain Health conditions or risks, one being Endo. The support, compassion and info shared on both of them can be quite helpful in helping to prepare for the possible issues you might endure as a result of having your Ovaries removed. Many tho have found some great success with the use of various supplements & meds. Here are links to both of them:

No-Hormone Desert Oasis

Hormone Jungle

One thing to remember tho when browsing those forums is that the gals still there posting do so due to issues or problems their experiencing. Those who had no problems are no longer in need of a *Support* forum....

The following links contain several informative articles on the many aspects & concerns faced with Endo:

Endo & Adeno Resource

[color=royal blue]Endometriosis Awareness & Information [/color]

I would also suggest seeking out another opinion if you haven't done so...IMO, it's very important to receive another view or confirmation of a condition(s) when considering such a major surgery as treatment. This is *your* body and only you can decide what you feel is the best treatment for you...as you are the only one who will have to live with the outcome, good or bad.
Good Luck with everything! I pray that whatever option you undergo that it can finally bring you some much needed relief to all you continue to suffer
I do hope you will continue to post & let us know how things are going for you....we will be here for support no matter what...((((hugs))))

Sweetkaye,

Let me say that you made the right decision to run from that doctor who didn't want to talk about the hyst until the morning of. Your doctor should be more than willing to answer all your questions well before surgery day. Heck mine even called me at home at 9PM to see if I had more questions, so keep looking for a doctor you feel comfortable, you'll know it when you find him/her.

Educate yourself about all your options. I too have endo and it stinks. BC, Depo Provera, Prempro, Laps you name it I've tried it.

I've been told I will be put on testosterone after the surgery to help with my drive and keeping my cervix to help also and to stay away from estrogen as that feeds the endo. I figure sex can only get better from where I stand now. My doctor told me that having a hyst and getting off the lupron and Prempro would be healthier and my drive would be better than it is on the lupron/HRT (miserable stuff isin't it).

So find a doctor you trust, do your research, and their are plenty of websites that you can research your doctor on to see if he has had any lawsuits/complaints etc filed against him and many know have profiles you can look up online. I had to go out of network to find mine but its worth every penny.

Take care of yourself,

for both of your replies. I'm goign to check out the links here shortly. Thank you soo much!!

The appointment I have on April 26th is infact with an Endo Specialist in Pittsburgh. I was really worried about seeing a general gynecologist for something like this, so I talked to my husband about driving into the city. His reply shocked me. Usually he wants to avoid it at all costs, but he asked my why hadn't I called yet. LOL SO I'll see her on the 26th of this month adn that cannot come soon enough for me.

Thank you for the replies. This is such a hard decision and I just want to go into it not regretting it. I don't see how I could with all that I'm going through now. My babies need a mom and right now, I'm more like the patient. :*(

So thank you from the bottom of my heart. I'll check out those links and do more searching. Right now, though, I must prop my ankle up. I finally felt a bit better so took my youngest ones outside, only to fall down and fracture my left ankle & sprain my right write. Lovely birthday present, eh? Oh well.

Thank you from the bottom of my heart for your replies. They helped tremendously.

Hi Brenda - I just want to weigh in on the libido issue - I had my surgery March 22 and was very happy to begin feeling like having sex before my doctor said it was even ok to. I didn't have my ovaries removed; I have a friend who did, though, and she's had no problem.

I had some complications with my surgery but am still glad I did it - and my symptoms were minor compared to yours

With respect to fatigue, the first week was the most important time to have someone at home. After that, it's just a matter of being really tired and needing to rest. I'm almost 4 weeks post-op and still really pooped some days. People should not expect anything from you for several weeks, take advantage of offers to help and get a babysitter in every day so you can rest.

Good luck.