No more ovaries...HRT or not? Endometriosis

Hello all. I haven't posted on Hystersisters in quite some time. I had my hyster on 12/30/08 for fibroids and endometriosis and my right ovary was removed at the time also (TAH with RSO) due to massive scarring from too many ovarian cysts. Doc was able to leave the left ovary because it looked fine. Well, I started having pain every month over that left ovary about 7 months ago and finally saw my doc for my annual in January and mentioned the pain. He did a transvag ultrasound but all it showed was a small ovarian cyst which he said was nothing to worry about. He gave me Ponstel (an NSAID) to take next time the pain came. Last Wednesday, on 3/30/11, at around 4 pm I had the most blinding amount of pain over that left ovary and after my friend came over to pick up the kids I went to emerg appt at GYN. The doc I saw wasn't my doc but he saw quickly how much pain I was in and sent me directly to the hospital for admissions and said I would have surgery the next morning by my doc to get that left ovary out. The surgery took just under 3 hours and started out as laparoscopic but doc said the endometriosis was so advanced that the ovary had adhered to the intestines and to the abdominal wall and the fallopian tube had adhered to the bladder so he had to re-open my abdominal incision. He is really worried about the incision re-opening on its own because this is the 4th time that incision has been opened. I have a couple new scars too that I've never had before where he tried to continue the laparoscopic route and obviously put a scope in a couple different place on the side of my abdomen. The bruising and swelling is massive. Recovery from my hyster was a breeze, this is horrible. I also lost half my blood during the surgery and required 3 blood transfusions. I got home yesterday after being in the hospital a total of 5 days.

Here's my question...I now have no ovaries. The hot flashes have started. I didn't realize until I started reading on here that my daily migraines since the surgery could be caused from the lack of hormones my body is producing now. Doc said its unsafe to try HRT for at least 2 months postop because he is terrified that the endometriosis will come back and will overtake my bladder or intestines again if those hormones are present. I am now scared to death of taking hormones ever because I don't want to ever go through another surgery like this or be in this much pain again. I am 29 years old so HRT makes sense for me based on my age. I quit smoking while at the hospital and intend to stay quit as I've been wanting to quit for some time now. Breast ca runs on both sides of my family. I've heard that not taking HRT can decrease one's risk of developing breast cancer. I already have fibrocystic breast disease, dx'd last year. So do I take HRT or not take HRT? The hot flashes are miserable as are the daily migraines but what are the advantages of taking HRT vs. not taking HRT? I need to become educated on this to make a good decision and am asking here for help.

Thanks!

I don't really have too many answers, but I wanted to say, "Bless your heart!" You've been through so much for just being 29. I do not know what is best for you or how confident your doctor is that he removed all the endometriosis that was there (doesn't sound like he/she is too sure). But I can tell you that I had terrible endometriosis that caused so many organs to adhere together, plus going down to both my colon and nearly down to my ureter, but my surgeon excised the endo and I have been able to take HRT these past 3 1/2 years just fine, with no pain or problems returning.

One helpful thing is that you no longer have an ovary to cause havoc with the endo. I guess it just depends on how much endo the doctor may have left behind. In the scope of your whole life ahead of you, maybe 2 months isn't too bad if they think you can start HRT after that.

Hugs and prayers coming your way .

Blessings,

Brenda

For those of us with endometriosis, we have to weigh the risks of endometriosis issues with the risks of no estrogen. It can be difficult and no two of us will make the same decision and the pros and cons will be different depending on our own circumstances and overall health.

Unfortunately, whether or not one uses hormones, endometriosis can remain alive and well. It can be fairly resilient and can even create its own supply of estrogen. In fact, some doctors feel that even after waiting a space of time, the endometriosis can plump right back up once estrogen is introduced to the body either with ERT or supplements or foods. To further complicate the situation, fat cells can produce and store estrogen which can be a problem.

My point in sharing is that no estrogen isn't always the answer and there are health risks that must be considered if one chooses to use no ERT. Estrogen can be essential for the health of our bones, cardiovascular system, eyes, and skin. Additionally, it plays a roll in our sexual, mental, and emotional health.

My best advice would be to find a doctor who thoroughly understands both endometriosis and hormones and discuss the situation and your options. Possibly using a combination of estrogen and progesterone would allow you the benefits of ERT without high endometriosis risks. Keep in mind, the cancer risks surrounding HRT are a bit complex and not as cut and dry as they seem! For instance, it is Provera (synthetic progestin) that caused the slight increase in breast cancer rates in the WHI study, not the estrogen. There was no increase (actually a very slight decrease) for women on Premarin (estrogen) alone.

Since you may need progesterone to go along with any estrogen, you might want to be more diligent about using progesterone rather than progestin as they are different and can cause different side effects in women.

in there and do know that during recovery without hormones, everything is going to look even more difficult than is really is. So try to cut yourself some slack and don't expect to learn everything about hormones and endometriosis overnight.

You can click on "Menopause" in the purple bar at the top of the page to find a wealth of hormonal information about hormones and we have endometriosis info in our Endometriosis forum.

Right now, you can talk to your doctor about your options for the migraines. Either prescription meds might help or Excedrin. For hot flashes, dress in layers, keep a fan nearby, and avoid hot or spicy foods.

If for some reason you do ever need surgery again, make sure your surgeon specializes in treating endometriosis and will be able to excise the endometriosis implants. And don't hesitate to post your endo specific questions in our Endo forum!

Brenda,
Thanks for your kind words. I had not even considered that he didn't get all the endo this time. I don't know why that thought didn't cross my mind. I cannot endure another surgery or endometriosis returning, there's too much scar tissue and the skin is so thin that the doctor is fearful to take out stitches before next Monday and won't take out staples for at least another week after that; he is so fearful of the incisions re-opening.

Weiser,
Wow, thank you for all that info! I didn't realize that my endo could still exist without the hormones! How depressing is that? I can't continue to go through any more surgeries or the pain of endometriosis ever again. I had been noticing for several months some bladder issues which my GYN dx'd as OAB and have been wondering since my surgery last week if the symptoms of OAB weren't actually because of the endo and the adhesions.

Thank you for directing me towards the Menopause link and the Endometriosis forum. I plan to take full advantage of those areas of this fantastic site! I think the worst part I'm dealing with right now is the hot flashes, they are absolutely miserable. DH complained to me last night that I'm going to make everyone in the house sick with how cold I'm keeping the house but I told him I am STILL on fire all the time despite the cold AC and all the fans. I asked him to pick me up some smaller personal sized fans that I can keep blowing on my face and stop freezing out the rest of the family. I guess its a good thing I don't typically like hot or spicy foods anyway! Right now DH would be happy if I would just eat something but the nausea is still so bad that I struggle to eat a couple of bites of something bland every day.

Thanks again for all your help!