Drug treatment options for endo

Hi everyone

I had my follow-up appointment with the gyn yesterday after having my first laparoscopy last month. I do have severe endometriosis and yesterday the gyn talked about the different drugs I could take as the pill obviously wasn't working. (I had been on the pill for contraception, not knowing I had endo).

I wasn't keen on any of the drugs she talked about so I was wondering if anyone has any experience/views about them.

Depo-provera
Implanon (not too keen about having a piece of plastic in my arm!)
Danazol
and some other drug which would put me through menopause

Not keen on any of them due to the side effects I've read about and especially the menopause ones affect the bone density. My mum has osteoporisis so my risk of that is high so I don't want to take drugs that will increase that risk.

The gyn seemed keen to put me on drugs so I opted for the provera in tablet form. I haven't got them yet though. The gyn seemed keen for me to have the Implanon implant and gave me a booklet about it and said I should think about it.

She said she was under the impression that I did not want to have children but every time I have seen her before and after the operation I told her yes I do want kids so I feel a bit annoyed that she didn't listen to me there. :mad:

So I feel like going to see another gyn just to talk about my options.

Just so confusing, if I leave it alone and do nothing then it's going to come back again but the drugs seem so serious and I don't want to mess my body up with them.

Well, sorry for the long post. Just curious about everyones experiences with these drugs to treat endo.

Thanks all.

Lynny
xoxo

Hi lynny,

I am going for my first lap next month and i am terrified! I have heard a few things about the depro and the bar. I heard the depro can play tricks with your cycle and cause heavy bleeding but that was through people that have injections.

I don't like the idea of the bar either but they say if you suffer from side effects it can be removed straight away where as the depro will take longer to get out of your system.

You should look into natural thearpy as well such as chinese medicine. You never know unless you try and the results may be well worth it.

Racheal

Hi Lynny

I've been on the Depro, Danazol and Zoladex (when not TTC), and Provera (when TTC).

Basically, it sounds like your ob wants to try to settle the endo or postpone the regrowth of endo and all the drugs you have listed will do this in various ways. (Mainly they stop you having your period and therefore hopefully stop the endo from growing etc).

I had severe endo diagnosed in Nov 2000 and then went on provera for three months afterwards (it was a very high dose I just remember what, at the moment). We had embbies in the freezer, and the second FET after the op (Aug/Sep 2001) I feel pg with DD. So the treatment can work.

Unfortunately the endo came back aggressively after the pg and I had another extensive lap (4hrs) Jun last year. However, at the recent lap (this month) the endo was graded low which is great given that over the last 10months I've been stimmed and had numerous tranfers.

If you don't feel comfortable with your ob then make sure you obtain copies of all medical details (my ob puts together a letter for me each time, detailing what he did in the lap) and get another opinion.

Have you had your CA125 before and post the lap?

Have you had a review for IVF as well?

Thanks Racheal...I was terrified of my first lap too considering it was my first ever operation but it wasn't as bad as I had built it up in my head to be! I'm going to suss out the natural therapies as well.

Hi Sheree - yeah the gyn wants to stop me having periods so the endo doesn't grow back. I'm just wary of all the side effects of these drugs 8-[

My gyn hasn't mentioned the CA125 test and I never knew of it until reading about it here so I didn't have it done.

I haven't had an IVF review yet. All of this came on quite quickly since it all started with me mentioning to my GP that my periods were painful, etc etc. DH and I weren't planning to TTC till later this year so now at the moment all I want to do is get the endo sorted and work out when we want to jump into IVF.

What's involved in the review for IVF?

I have a note from the gyn that she had written me after surgery saying that I have severe endo, my tubes are blocked will need IVF for pregnancy and that she separated some of my bowel that was stuck to my left ovary. She also gave me pictures of it. Would this be enough to take to another gyn? Or should I ask them for a copy of my file?

I don't even know what she did in me regards to lasering/cutting it out etc

Thanks so much for your advice. I really appreciate it.

Lynny
xoxo

Hi Lynny

Yep some of those drugs have DREADFUL side effects - sorry I don't mean to scare you but endo sufferers truly do suffer with the desease and the treatment!

I would ask for as much as possible, so a copy of your file, including pathology results etc etc.

Then I would do some research and find the best qualified endo specialist in your city - if they are an endo and an RE then all the better.

Good luck

Mine came back while I had an implanon in, so I wouldn't suggest that option - Good luck finding your solution :)

Saschasmum
Who is your RE and endo specialist? Just noting that you are in WA too!

So sorry for your recent chem pg and MC - I recently had an ectopic. But one positive to from it all is that your endo isn't effecting your ferlity if you are actually getting pg. In that, I mean endo is reknown for causing infertility for a number of reasons (eg blocking tubes, causing adhesions etc etc) but one of them is that it changes the blood enzyme makeup reducing the implantation of embryos.

After being diagnosed with Severe Endo I had Zolodex injections for 6mths. They don't give you your period but you can only do blocks of 6mths courses. It was a small pellet inserted just under the skin in your stomach.. Well that is where mine went.

I just continued taking the pill after that even though it didn't do much for the Endo situation and had a 2nd lap 4mths before I fell pregnant with my 1st born. The Endo wasn't as bad in the 2nd lap as it was in the first, but adhesions had stuck a ligament and my womb together which was causing me some grief so needed fixing.

Love

Thanks girls.

Sheree - is it ok to ask you who you'd recommend as an RE/endo specialist? I'm in Perth also.

Kathryn - I wish I could just continue on with the pill and forget about it. But the gyn doesn't recommend me taking the pill anymore because it has oestrogen in it which she says encourages the endo to grow even if I take it continuously ?!

All of these drugs, I'm hesitant in taking as I've heard they can cause loss of bone mass and I'm a high risk for osteoporosis as my mum has that.

So confusing, what to do...what not to do... :?

No worries, I highly recommend Dr Yovich at Pivet Medical Centre - but he is hard to get into see (2-3 month waiting list)

Thanks Sheree

Well, I haven't had my script filled yet. Don't think I will. DH doesn't want me going through the side effects! Neither do I for that matter. So I'm going to give it a couple of cycles or so and see how I go.

So I guess I can officially say we're TTC :D After being told I'll need IVF, I will be ecstatic if I fell pregnant naturally. So will be saving up for IVF and regular TTC'ing in the meantime.

Going to look into seeing a naturopath as well.

Lynny,

Really good ideas there. I hope this little window of opportunity is all that is needed for you to fall pg naturally. Then while you are pg you don't have to worry about the endo because the pg will keep it at bay. The naturopath is a good idea too. They have some great herbs to help with endo and related problems. See one that specialises in Natural Fertility Management if you can.

I was talking with my GP after my endo was diagnosed. I said to her I deeply regretted not getting the lap years ago when I was in my early 30s. She said that if it had been diagnosed at that stage, they would probably have kept me on the pill until I was ready to conceive which as it turns out, is what I was doing anyway. I went on the pill at 30 to cope with the terrible period pain. I met my husband when I was 31 and we married the following year. I stayed on the pill until I was 34 then started TTC so in the end, things worked out the same. I felt better about things when she told me that.

Good luck Lynny! Stay in touch with us.

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Saschasmum
Who is your RE and endo specialist?

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Don't have one - just my gyno down in Bunbury. Am scheduled for surgery in June with an endo specialist from King Eddie - can't remeber his name. Something exotic and indian.....