Endometriosis, fibroids & surgery

[seed181]

I'm 30 and have always had heavy bleeding and cramping during periods - I once passed out in a shopping mall because my period was so heavy. For the past year I've been having pelvic pain and abnormal bleedings and have now been diagnosed with PCOS, endometriosis and fibroid. My gyno recommended that I have surgery to remove the fibroid/endo (and possibly my appendix too) and told me that I'll be going through menopause. I was told that it'll be a conservative treatment so I can still get pregnant in the future, if and when I decide to have children. I don't know anyone who has endo and/or  fibroids, so I'd really appreciate it if someone could share their experiences as I need to decide soon on when to have the surgery.

[seed181]

Hi! You mentioned that instead of taking lupron and being induced to menopause, you are taking letrozole. Are saying that you are not on menopause?

I just read a site on letrozole. It describes side effects similar to lupron. Some of them I'm currently suffering from e.g. muscle/joint pain, stomach pain, vaginal bleeding, headache - and I haven't even had my laps yet. I guess it depends on each person, how well they adjust to certain medications. As you said, you have no side effects from letrozole. I recently had indigestion due to a cough med - suddenly belching in public is sure embarrassing.

I'll be seeing my doc in another week or so to confirm my op date. You've given me several questions to ask him - thank you. Wish me luck!

[bello13]

I have Stage 4 endo and it is so severe, my doc has told me I need a complete hysterectomy. I have lived with horrible daily pain for nearly 4 years now (since the birth of my daughter). It wasn't until a recent lap showed severe endo. The doc that did the lap was my SEVENTH physician for this and I had tried 8 different meds for pain management. Nothing worked. I was at the point of just giving up and succombing to the depression and pain when I found a new doctor who is an infertility specialist and endocrinologist. She told me she looked at my surgery notes and could see immediately that I had adenomyosis as well as endo and that despite the surgery, it was still everywhere and no more laps would work.

Now, I believe I was in the same boat as you BUT my physician gave me TWO options, not just the one option being Lupron and medical menopause. Up until the day I saw her, I had only read about and was told about the medical menopause and Lurpon shots. I was floored that no other doctor had told me about a medical breakthrough for endo pain. It's actually a drug used for breast cancer and also to promote ovulation for some infertile patients called Letrozole. A lot docs aren't using it yet because they don't feel there's been enough studies done BUT the studies that have been done are absolutely remarkable. The patients who have used it have a 95% success rate and it does NOT cause side effects or put you through menopause! I work in research at a leading research hospital, so I'm very comfortable with drugs being used for things other than what we initially thought they could only be used for.

I took 2 days to read about the 2 meds online and soon I knew I wanted to try the Letrazole. Like my doc said, most people are scared to try something that hasn't been out for ages, even though this drug appears to be close to a miracle for most endo patients.

I went for it! I was so nervous about what it would do to me. I started the drug 9 days ago. After only a few days, my pain (pain that I have had at a scale of 6-10 daily) started to diminish. I tested it by having sex, which usually causes a lot of pain and to my suprise, the pain was minimal. I am now on day 9 and loving life!!

Letrazole is an aromatase inhibitor. Aromatase is a protein in the body that is responsible for producing oestrogen. Normally, it is found in the ovaries, and to a much lesser extent in the skin and fat.

Research has shown that aromatase is also found in high levels in the ectopic endometrial tissue of women with endometriosis, which contributes to the growth of their endometriosis.

Further research, has shown that inhibiting (making it less effective or ineffective) the aromatase by giving women an aromatase inhibitor suppresses the growth of their endometriosis, and reduces the associated inflammation. This, in turn, significantly reduces their pelvic pain.

I feel like this is a miracle drug for me! I'm not saying I'm 100% pain free but now my cramping and pain feels like mild period cramps that can easily be taken care of with Ibuprofen. Ibuprofen or any other OTC never even touched the pain before but now, it's all I need and I'm good as gold...when I even need it, which is rare.

My mood is better, my pain is virtually gone and I have zero side effects. I take it with 1000 mg's of calcium and vitamin D to keep my bones healthy. I feel the best I've felt since before I was pregnant!!!

I'm happy to talk to anyone about this. I have had a very long road/journey but I'm confident I finally found a doc who understands and is smart enough to realize how God awful endo can be - she takes this very seriously and I am confident I am finally on the road to happiness. I will still have to have my uterus removed in the long run but for now, I can buy time with this new med and wait until I'm ready...not when my endo decides for me!

***@****

[seed181]

Thanks for your reply. Hope you had a merry christmas.

If I remember correctly, the doc said I have PCOS and possible endo. It was recently that he told me I have fibroids during OS. I've been taking Mercilon for the past 4 months. While the period days have reduced from more than 14 to about 5-7 days, the pain is still there, even when I'm not having my period.

I believe the treatment you had will be the same as what I'll be going through. Surgery with no removal of other parts (except maybe my appendix) and induced menopause. My concern now is getting pregnant in the future and side effects from the meds. My doc said my chances of having kids are still there. However, as you and others (in the forum) have experienced, the meds can cause joint/muscle pain, and I read somewhere that some can cause osteoperosis. I'm currently suffering from back pain due to scoliosis (had an RF treatment done 4 months ago). The back pain is now manageable even without painkillers, so I'm just worried that the meds will make it worse.

[ticked]

I am not sure how PCOS works but there is no way to confirm Endo unless you have surgery.  Did they say they thought it was endo or that it was endo?  Fibroids I know they can tell on an US or a CT scan.

If you have a good endo doctor you will not have to remove anything.  I had Stage IV endo everywhere. If you look at my profile it will tell you all the details.  I had it on my bowels, rectum, bladder, ureters, and my ovaries were wrapped around my uterus and the doctor removed it all without having to remove any of my organs. I was put on Lupron after my surgery which puts your body into menopause.  I had many side effects from that medication including depression, joint/bone and muscle pain and after a year I came off it and went on the pill continuously and it works like a charm for me.

I understand the pain you are talking about and the fainting.  From the day before my period my body would start to feel weak and the day of, good Lord the pain was so intense I would throw up. I would lose a lot of blood and it would last for over 7 days.

I would research in your area to see if you can find the best doctor that deals specifically with endo, because you risk a doctor going in that is not as educated on where endo could hide or how to remove without removing other parts etc.  

I found the best after lots of research and thanks to people on here who lived near me.  They led me in the direction to one of the greatest doctors.  His bedside manner ***** but hey he did an amazing job considering how invasive my surgery was.  

Good Luck :)