Endo Treatment

[Deevine]

Hi Ladies,

Sorry if this has been done before. I've just been diagnosed with severe Endo that has been excised. My left ovary was attached to my bowel wall and had a big patch in pouch of douglas. My gyno has given me pretty much the only option of going onto Zoladex. He says this will be the only way to stop it coming back and to preserve fertility, but has left it up to me.

My questions are has anyone used this drug, pros and cons, and after a 6 month cycle, what did you experience?

I know that I am fertile as I had a miscarriage in June. Not looking at trying again for another 6 months or so. I'm just a little confused as to what to do as i've read some pretty nasty stuff with regards to Zoladex, but, I don't really want to mess around with my fertility either. The side effect that it might induce a real menopause really freaks me out!

Thanks

[mummy2chloe]

hey Angel Dee

i cant help you darl, but just wanted to say sorry about your endo and sorry about your miscarriage. i really hope things work out for you.

dont stress to much some one will be able to help you, its the weekend and bb sometimes gets quiet on weekends, but with any luck someone will see this post soon and will know all about Zoladex

let us know how you go ok,

take care sweetie

[dusty]

hi AD

sorry to hear about your endo but i am glad they have removed it for you.
i too have severe endo and after a couple of laps had it removed. but i elected to not be treated for it with drugs, and go straight into IVF as time is running out for us TTC and it has really stuffed up my 'plumbing'. there is a girl in the long term TTC threads that went on 3 month drug treatment of endo (not sure which drug thought) before recently starting her IVF.

my 1st FS recommended 6 month drug treatment for me before starting IVF but i got a second (and third) opinion which differed and i decided to skip the treatment.

i am not sure how successful drug treatment of endo is, and whether it defers or stops regrowth significantly. the endo support society should be able to provide more information if you were interested.

also i don't know your personal circumstances. i don't suffer any endo pain (a blessing) but i know this can be a huge driver for many women.

have you sought a second opinion or talked about your treatment in terms of your short to long term goals?

best of luck hun
dusty

[nic]

Hey Dee,
I was recently diagnosed with endo after TTC #2 for 5+ years. My FS said that he didn't think he could remove it as I had white sheets of it instead of the classic chocolate cysts, and he thought he would damage my uterus and ovaries if he tried to remove it. I also had one blocked tube.

I went on Synarel for 3 months before starting on our first IVF cycle a few weeks ago.
Normally the bottle of Synarel is roughly $100, but because I have endo, it is subsidised and I got it for about $30 a bottle. I was sniffing twice a day.

Sorry I can't help you out with the other drug. I'm sure I've read that a few girls on here are or have been using Zoladex.

Maybe getting your Dr to explain all the pros and cons of the Zoladex and any other drugs that he thinks would be ok for you to use.

Sorry I can't be anymore help than that.

Goodluck..

Nic

[Deevine]

Thanks Nic, Dusty and mummy2Chloe.

I've read that they sometimes give this drug before begining IVF, but i'm not yet ready to conceive again, not for another 6 months or so, and I want to try naturally before even contemplating IVF.

My main concern is what Zoladex will do to my cycle and ovulation once I come off it, because the course is 6 months. And i've read that the next step after a course it to go on the pill, long term. For me, that's not an answer to a problem. I really want to try natural therapies, as i've has some success in the past. And this will help prepare me for conception, and to make sure it sticks this time.

I am getting a second opinion from Dr Michael Cooper, who i've seen has been high recommended from some of the women on here in other threads, and i'm going back to my gyno to ask a zillion questions about the Zoladex. I want to give natural therapies a go for 3-6 months first, as i've heard some positive stories, but don't know if there is the option of going on the Zoladex down the track if it all falls apart.

Its just been a very long, emotional week of not knowing what the right thing to do is. There seems to be risks with any 'treatment' of endo, whether it be side effects or risk of the disease coming back quickly.

Thanks for reading/listening to me ladies, it really does help to get it out.

Dee xoxo

[S'rose]

Hi Angel Dee,

While I don't have severe endo, I definitely have endo which was removed at a lap surgery in may. I just came from a session with my Acupuncturist and we believe it has started to come back already. He is putting me on what he likes to call "blood busting" herbs which keep the blood flowing and moves the blockages already built up. He has had some great successes in completely removing blockages with no drugs involved.

I have found the benefits to work for me and has meant I can continue TTC at the same time.

HTH and good luck with an answer on the Zoladex.

[Deevine]

Hi S'rose,

Thanks for your reply. Have you found that the herbs have helped? What sort of symptoms did/do you have? Sounds like your endo has grown back pretty quickly... Have you been on herbs since your lap?

Sorry for all the questions, i'm just trying to get as many perspectives as possible, and while getting info from the doctor is a priority, I also like to hear about real experiences. Its easy for a male gyno to say that the induced menopause isn't that bad with Zoladex, he's never had to live it/contemplate it, and its not gonna screw with his fertility!

Isn't it lovely being female sometimes...

Dee xoxo

[S'rose]

Dee, its not problem really.
AP and I haven't really been tackling it as a priority as it never really bothered me. Didn't even know about it until I had the Lap.
Its only now that I have had 2 really bad AF's in a row that its become serious business. The herbs are raw boil in a pot type so they taste pretty ordinary but tbh not the worst he's given me. We are using the strongest concoction there is so it will clear fairly quickly he thinks. Since starting the herbs I have felt discomfort so they certainly feel as though they are working in the right way.
I feel really confident with my AP though, he has a really strong interest in things like infertility and PCOS/Endo etc, so he really looks after you and understands all the emotions through each stage. He has had lots of success treating endo as well.

[Deevine]

Thanks again Sonya. Its just such a really hard decision to make knowing that you are putting your fertility at risk. Whether I do the meds or the natural stuff, there is still the unknown of whether it will impact on my fertility and whether it will come back with a vengeance.

I read through your TTC journal and just wanted to say that I think you are a remarkable woman and that I believe that everything will work out for you. Stress makes endo worse, so take some time each day to deep breath and think positively that this will happen for you soon. Sending you a big cyber hug.

Dee xoxo

[S'rose]

Thats really sweet Dee, thank you for the kind thoughts. And I do forget to really breathe all to often.

I agree, its a huge decision and if I may be a little presumptuous here, you really seem to not want to go the drugs option. If you have decided not to TTC in the near future, is there any reason you can't try out the natural therapies and if you feel its not helping... then look at the drugs option?
Do you know of any local AP's that you could call and discuss this with?
It might help to hear from a practitioner what they think about the situation.

[Laranna]

Hi Angel Dee

Just came across your post and wanted to say that I too was diagnosed with severe endo. Like yourself my left ovary was attached to my bowel and had it through the pouch of Douglas. I also had it over my uterus and both my tubes were completely blocked. My gyno told me that I would need IVF to conceive and that my chances of falling pregnant naturally were pretty close to zero.

With regards to Zoladex, my gyno also wanted to put me on that or the other one Danazol. She gave me heaps of info about it and I went away and did my research. I came to the conclusion that I didn’t want to use ANY drugs at all. My main reason is that the Zoladex and Danazol can decrease your bone density and as my mum has osteoporosis, I am at a higher risk of getting it as well so I didn’t want to take anything that would help that along!

Anyway that was back in March 2005. I did see a FS at the time who said my chances through IVF would be about 30%. I left it at that and just trusted my body to get back into it’s own rhythm after being on the pill for 10 years.

Now nearly 3 years later, it turns out that the gyno was wrong and I know that my right tube has cleared itself as I’m now 9 and a half weeks pregnant - conceived naturally! (I know it was my right because I’ve got a corpus luteal cyst on my right ovary). I truly believed it would never happen.

I’m sorry I don’t seem to have really answered your question! But IMO I think trusting your body and doing things naturally will give you as good a chance as taking any drugs. I highly recommend the book “Endometriosis & Other Pelvic Pain” by Dr Susan Evans. It covers all the drugs and natural alternatives to managing endo. Some things as simple as having a good clean diet and regular exercise can do wonders to your body and how you feel.

Good luck with your decision.

[Deevine]

Hi Sonya, you're right, i really don't want to try the drugs. I am going to ask my gyno if i can try natural therapies for 6 months and see how i go, and if it comes back really fast, then i may consider some sort of medication.

Lynny, thank you soo much for sharing your story, you really have helped me in more ways than you know. To hear of someone in the same situation that didn't take any meds, and the positive outcome you've had, is really reassuring. I know that every case is very unique, but I just needed a little ray of hope to show that meds aren't the only answer (which is pretty much what my gyno said, meds or pregnancy!).

I'm feeling less hopeless now when it comes to making a decision of what to do. I'll keep you all informed of what the gyno says and what my second opinion is. There is soo little information when it comes to endo and the medical treatments, so any extra info helps!

Dee xoxo

[Deevine]

Hi Ladies,

Just thought i'd update on how I went with Dr Cooper and with my gyno. Dr Cooper pretty much thinks that things aren't as bad as my gyno is making out and that the Zoladex is overkill. He's given me a prescription for the pill, and told me to avoid future laparoscopy's as he doesn't think it would help me too much. I actually have two diseases... endometriosis and endosalpingiosis. There is not much known about endosalpingiosis but apparently it is a self-limiting disease and should go away on its own.

Went back to my gyno with DP, and he pretty much dismissed the pill saying it wouldn't do anything for me, and that my disease is 'severe' and I needed Zoladex. He reckons i'll have severe problems my whole life, and probably need a hysterectomy in 10-15 years (i'm 27).

I don't understand how two endometriosis specialists can have such differing opinions. Makes it soo hard to make an informed decision. But, after speaking with DP, i've pretty much decided to try the pill and take some natural therapies to help with the immune and inflammation component of the disease. I just need something to get me through the next 12 months till we start TTC.

Sorry for the long post, I just want endometriosis sufferers to know that its important to get as many opinions as you can and to do what feels right for you.

Dee xoxo

[S'rose]

Dee, Specialists are just hard work aren't they... you never know if they are looking after themselves or you.

I am glad you have been doing research and seeking as much info as you can get. I hope you do try AP as at the very least you will find someone who is supportive about your body and your health overall. And they often have interesting info that specialists don't share.

And if it helps, I think you will be fine and can't see that someone can predict a hysterectomy that far in advance without taking into consideration many other factors. Health is an evolving thing and no one knows what the body is capable of really.

I send you loads of love and support hun, keep me updated here about progress and what happens after your first natural therapy appt. I would love to hear their take on the situation.

[Deevine]

Thanks soo much Sonya, sharing your story has really helped and I will definitely seek out a AP and get their take on the disease.

The hardest thing for me is i'm actually a qualified nutritionist, and so the battle in my head between trying to treat it naturally or medically has been a real emotional one! I've done SOO much research on the disease and on the best way to treat it and it all comes back to diet and lifestyle. Its a disease of excess oestrogen, inflammation and immune response, so i'm going to tackle these three factors and focus on cleaning up my diet and improving my exercise.

I will definitely keep you informed on how I go. Also, thank you for your support, it really does mean a lot to me. I have my fingers crossed for you and you are in my thoughts... sending you positive vibes and baby dust!

Dee xoxo