Zoladex for endometriosis

Hi there,
I'm new to this site....and to endometriosis. It all started for me about 4 months ago. I've always had painful periods but thought it was normal. 4 months ago I had intense pain with periods and bowel problems. After much pain and running around to Drs, I was told by a specialist that I had endo. I had my first lap 1 month ago. I had endo in front of my uterus (removed), on my appendix (removed). I had my left tube removed from my uterus (was stuck). My bowel is stuck to my uterus, my pouch of douglas obliterated with inflammatry endo over my uterus at the back. This was left because 1/ didn't have a bowel surgeon at the time and 2/ my specialist thought that removal would leave scar tissue - not good for fertility (which is where I am at now - wanting to start a family).
Anyway, because of this my specialist has recommended 3 months of Zoladex to settle the endo and inflammation then go straight to IVF. I've just had my first zoladex yesterday. I'm also taking add back (hormone replacement). I've heard lots of horror stories about these drugs. I was wondering if people could share their expeirences if they have been on it?
What was your experience like?
Many side affects?
Add back therapy?
Do you think it was worth it?
When did your normal cycles return?
Conception after? (I've heard that you can't get pregnant on it as it may cause birth defects...I've also heard that some women can take months to go back to their regular cycles...how long until it is safely out of your system to get pregnant??
Thankyou in advance

I was on Zolodex for 6 mths after my first Lap. I didn't really notice any side affects and never had any trouble with my cycles after it, they returned after a couple of months. I finished my 6mth course in April 99, and have since had 3 children with my first being born in October 01. I had no trouble conceiving any of my children. My first born was conceived my first cycle off the pill.

Hi Niki, your story sounds almost exactly like mine. At the time my gynae wanted me to go onto Zoladex after my lap, but I refused. I didn't like the idea of being in a menopause-like state at the age of 28! In the end I decided to do nothing, no drugs, nothing and instead just focussed on a really healthy eating plan and exercise. I can't say whether this did anything for my endo or not, but overall healthwise, my periods improved tenfold and I just felt good. The docs had told me I'd never conceive naturally and would need IVF, but I did actually end up conceiving naturally 2.5 years after my diagnosis and now have a beautiful bubba boy :)

Thanks so much for the replies so far. I'm freaking out a bit over having Zoladex so it is so comforting to hear good stories! so happy for both of you to have babies too!

Laranna - were you trying for long before you conceived naturally?

Since I found out about the endo and being told I wasn't going to be able to have kids, DP & I decided not to bother with contraception. So, I guess you could say we weren't officially trying but weren't preventing either, so I guess it took us 2.5 years.

I was on Zoladex 5 years ago for 6 months, following my Lap. Side effects were: hot flushes, forgetfulness (post-it notes were sooo helpful :-) ), mood swings. Then I went onto the pill straight away. Prior to Zoladex & the pill I never put on weight and could eat anything and do no excercise. Since then I have to be more careful and have gained 15kg. I'm not sure if that's the Zoladex or the Pill though. We started TTC 11 months ago and haven't been successful yet, but I think that's more becuase of my very irregualr cycles than anything Zoladex did. Also, my endo hasn't returned (that I know of) and my tubes are clear, so for me Zoladex was useful and the side effects weren't so bad.

My doctor warned me about not getting pregnant on it too, and I think she said it was best to wait for 3 - 6 months after to make sure it was out of my system, but it was a while ago so that's a little hazy.

I was on Zoladex 5 years ago for 6 months, following my Lap. Side effects were: hot flushes, forgetfulness (post-it notes were sooo helpful :-) ), mood swings. Then I went onto the pill straight away. Prior to Zoladex & the pill I never put on weight and could eat anything and do no excercise. Since then I have to be more careful and have gained 15kg. I'm not sure if that's the Zoladex or the Pill though. We started TTC 11 months ago and haven't been successful yet, but I think that's more becuase of my very irregualr cycles than anything Zoladex did. Also, my endo hasn't returned (that I know of) and my tubes are clear, so for me Zoladex was useful and the side effects weren't so bad.

My doctor warned me about not getting pregnant on it too, and I think she said it was best to wait for 3 - 6 months after to make sure it was out of my system, but it was a while ago so that's a little hazy.

Zoladex... yep... been there done that.

Not fun.

I was 22 (I'm nearly 30 now) when I had my first laparotomy (I've had two of those). Afterwards my gyno prescribed a course of 6 months Zoladex implants (they were implanted somewhere near my bikini line).

First couple of months were a bit strange. I started with the hot flashes within the first month, I lost about 5 - 8 kilos (I was a walking skeleton) must have dropped about 2 or 3 dress sizes (due to the intense hot flashes), I had mood swings, teary outbursts over silly little things, no libido to speak of (not that it mattered since I wasn't in a relationship), constant exhaustion, terrible headaches, and basically I didn't cope well. I did everything I could to put weight on but it just kept melting off me. The only good thing about the Zoladex was that it stopped my periods. I think it took probably only 2 months or so for my periods to return to regular .... not long at all really.

Now I know EXACTLY what women complain about in the menopause because I've been thru it.

There is mention of risk of osteoporosis being increased after undergoing this treatment due to its effect on the hormones and calcium levels etc. Because of that suggestion I had a bone density assessment done prior to treatment, and one following the treatment and (as I was still at the age where bone density is on the increase (I think it continues to increase up to age 25)) I was relieved to find that my bone density had actually increased over that time. It probably has more to do with your age and general health and/or family history.

Did Zoladex fix my endo? NO. It recurred within 18 months - so I was quite disappointed that it didn't seem to do much for me. I was told that it could still recur after this treatment - but didn't expect it would recur so quickly and aggressively.

Just be careful and if you decide to go thru with it, make sure you listen to your body and surround yourself with people who are understanding and supportive of your situation.

Hi Niki1
Your story sound like mine but a year and a half ago I had everything you just said but had my left ovary removed had my op late 2006 went on Zoladex for 3 months they rushed me to IVF and fell pregnant first go. I know I was very luck but keep going with your treatment it worked for me.

Good Luck :p

I have been diagnosed with endometriotris. It's not fun I will tell you that right now! Not everyone has horrible side effects with zoladex but I am on my 3rd injection and I have had horrible side effects. My first injection I could start feeling the hot flashes starting to come, but that was all that I really had. My second injection I started to get alot of mood changing as in I did not want to be around anybody. I just had my 3rd injection on May 6th and I am telling you it has been horrible. It's like one day I grew horns and claws and somebody else is living in my body. I dont even feel like myself anymore. I get really bad hot flashes, and night sweats and really bad headaches. I am always hot and I have to wear 3 layers of clothing because I always end up taking more and more off bcuz I am always hot. Not to mention I am, 115 pounds and 5'3. That's not normal. I had 3 panic attacks in 5 days and just started feeling better today. My mood is just horrible. Nobody wants to be around me. My mom told me that they need to strap me to a bed but shes scared my head is going to start spinning around so they all need to start getting crosses. I texted my sister and told her to screw off and she called me mom and goes " what did I do?"...I did it just because. That's how it makes you. I have been with my boyfriend for 2 years and it's starting to ruin our relationship because I am really mean to him now. I love him with all my heart and I dont mean to be but I can't help it. I just dont have patience for anybody and I get very annoyed. Nobody can talk to me. I never feel good and I am always tired. I went to my doctor yesterday and he gave me some premarin to help with the side effects but I think I am done with the shot. Or I am going to go to another doctor that's a girl because girls know better then men. All they do is read books but they dont ACTUALLY know how we are feeling. Just like I said everybody is different with the shot but I think it's not good for you.

Hi,
I was put on zoladex in 2004 for a 6 month stint. i had grown a football size fibroid on the outside of my uterus at the age of 29 and my gyno at the time told me this would be my only chance of saving my uterus. I havn't had children yet so, this seemed the only option. WELL! i was at the time a very high level sportsperson, it stripped me of all major muscle bulk and then sent me into hot flush overload and menopause, and as a phys ed teacher out in the sun most days , this was not fun at all. Energy was zapped, extra weight etc etc. NOT FUN! the end result was my football when from that to a large softball, and i saved my uterus with a cesarian section operation and 6 weeks on the couch to recover. I thought i would then go back to normal but 12 months down the track i was only just getting back regular periods and up until recently had not been able to regulate my weight or put the muscle mass back on i had previously. I then decided to go in search of trying to find a reason, and discovered a doctor called Graeme williams (my saviour!) He did a series of unique blood tests and found i was very estrogen dominant (which in my opinion grows fibriods and is responsible for endo and pregnancy hinderance) And had little to no progesterone and testosterone in my system which is reponsible for burning fat and retaining muscle mass (if i have researched correctly). He gave me a simple natural biohormone cream suited to me, I rubbed it in every day and have been doing for about 10 months now and my life is back! muscle is back! weight is off, energy is back! I really urge everyone being told to go on zoladex or having trouble getting pregnant to research alternative methods first. eg Dr graeme williams and others like him who understand balancing hormone levels. If i knew what i know now, zolodex would have been the last on my list for the mess it caused in my body.
cheers,
hope this helps someone....