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Stage 4 endo - iVF jouneyr

4K views 7 replies 7 participants last post by  tide75 
#1 ·
Hi

I’m wondering if anyone can offer advice. I have been diagnosed with stage 4 endometriosis and have sever adhesions to my internal organs, with bowel involvement.  My tubes are blocked and filled with fluid and have been advised by my physician to have them removed.

I have been told I will be able to carry a pregnancy normal without any intervention (hopefully) however i’m not able to get naturally pregnant - I also have a cyst which has severely attached itself and entangled my ovaries.

Egg reserves all seem normal
Sperm is good

Initially we were advised that it would be major surgery with resection of the bowl and possibly stoma for a couple of months and then hopefully IVF and then a hysterectomy. 

I didn’t want a tube removal if possible and thought it was unnecessary, however when he went in he said the situation was a lot worse than anticipated and everything was severely adhered and he couldn’t locate my tubes due to adhesions.  He drained the cyst  and suggested Prostap to ‘calm down all your insides’ and then start IVF.  I don’t want to take the prostap as the side effects are worse than what i’m treating with it! I’m susceptible to vitamin d deficiency and bone thinning/osteoporosis and migraines so wish to stay clear. I’ve also been advised by everyone I’ve spoken to about this to not take it.  (Can anyone say otherwise here?)

I’m 33 - BMI 33 - never been pregnant before. 

- Dr is suggesting IVF long protocol with 300 mg & 3.75mg prostap (Lupron)


I’m currently considering a clinic in Prague called Gennet and wish to know if I will be able to have the ivf with them and not have the prostap

has anyone had ivf with prostap? Has it worked?
Has anyone had IVF without it? Has it worked?
Can anyone help me with any advice from a similar experience themselves.

This is really killing me inside as my hubby and myself want a little baby to complete our family and it’s not happening because my stupid body is just trying to stop me! Any help appreciated.




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#2 ·
hi esbe

not sure I can help much. I have endo also but never had a lap to diagnose. I suffer from bad pelvic pain and always have an endo cyst on my right ovary. I had the short protocol but I think that was more because of my PCOS than the endo as they wanted to make sure I don't get OHSS.

One thing I can tell you is that in my research about IVF protocols I have encountered quite a bit of information stating that the long protocol with Lupron is much better for endo sufferers as it gives the endo a change to quiet down before starting stimms.

You can ask about trying Zoladex instead of the Luron protocol. see what they say

 
#3 ·
Hi Esbe

I have stage 4 endo and had a horrible experience on my first, prolonged down reg with buserelin. The headaches were horrendous, very frightening in fact. I refused down reg for another 4 transfers own egg and donor egg (all negative), until I finally gave in on my 6th transfer and did 4 months downreg with buserelin and then decapeptyl. This was to improve endometrial function, and I finally got my bfp! Research does show prolonged downreg improves egg quality in women with endo and good egg reserves. In my case, I am convinced it also improved my lining (research does support this).  I was so against going on it, but I was prescribed medication to manage the headaches and they were not as severe the second time around. I was also prescribed add-back treatment to prevent osteoporosis.

It might be worth asking if you can also get medications to manage the side effects.
 
#4 ·
I love prostap! I have never felt as healthy as I did when I was on it. It didn't affect my IVF outcome but I felt so good it was brilliant for me. I had hrt for the 3 months and that probably helped stop any nasty side effects.

For actual IVF I did short protocol and had good egg collection numbers and good quality (despite over responding and being quite poorly). I had long down reg for Frozen cycles with Buserline and was quite ill with it, for me it wasn't very pleasant.

Research is great but people respond differently to different things and sometimes it takes a bit of time to work out what's best. I had lots of consultations during my treatment with different clinics all through Europe and it really was a 50:50 split on wether they thought long protocol was better or not (when done as part of the actual treatment).

Good luck whatever you decide to do xxx
 
#5 ·
Hey esbe,

So sorry you have this horrible disease. Me too :( I'm not sure where you are but please please please make sure you're seeing a good surgeon. I have been irreparably damaged by bad doctors. They are very strict on not discussing IVF though which I find very frustrating.

I know you desperately want a baby but if you have rectovaginal endo please remember that this can cause complications with birth. Endometriosis does not go away with pregnancy and it sounds very likely that if you're not treated first for your endo you will end up having to have a big surgery with (hopefully) a toddler in tow - that's not easy. If time is on your side I really would suggest getting your endo properly excised first.

I've had a lot of GnRH hormone over the years to try and "calm down" my endo. It's a cheats way out in terms of a treatment as as soon as you stop the endo grows. The only treatment is surgery. In total I've had 3 years worth of GnRH, often with HRT. I too am 33 and my bone density is way below where it should be.

I am afraid that I haven't had IVF yet. I'm looking to preserve my fertility as I've had to have surgery on my bowel, bladder, ovaries, uterus, kidneys and finally my abdominal wall replaced as the endo ate through it. We decided to freeze embryos so either I can hold out and try and have them myself or not have to worry so much the next time I'm threatened with a hysterectomy.

I'm also looking at Gennet. You're a paying customer, if you don't want GnRH no one can make you have it. You can always try a short cycle first. I'm more worried about the hormones which cause oestrogen increase as this will encourage any endo to grow. I've discussed this with a Dr in the UK so far and apparently us sufferers need to be given a particular drug to moderate our oestrogen response to try and control this. It's definitely on my list of questions for Gennet.

One more thing - Prostap, Zoladex etc.etc. are all basically the same drug. They are used differently to "suppress" endo compared to IVF. When used for endo, as a connoisseur (sigh) I'd say that the side effects are pretty universal across the board. I guess it may feel different when used in IVF.

Hope that all helps, feel free to PM me if you have particular questions.

 
#6 ·
hi Esbe

Just wanted to say i have stage 4 endo and had a down reg with buserelin. Terrible pains in bones and dizziness, then BFN. Had surgery before that to excise (not laser) ovarian cysts (I also have bowel involvement but just live with the pain). Would def recommend a good surgeon to remove any endo that's stopping preg. Then tried short protocol at a Care clinic, with endo scratch month before and i'm convinced that made all the difference. I miscarried but then has preg with only frozen blast to produce daughter, and 2 years later another fresh round with same protocol (and the absolute max drugs allowed) produced a single blast whose now my son.

best of luck, I really hope it works for you. It's a slow and painful road but I hope it has a good outcome x
 
#7 ·
Hi Esbe

Are you still on the forum? Just curious as to how you are getting on and what you decided?

I had along protocol with buserelin and I felt really good on it - endo pains were so much better. Unfortunately I can't compare the ends result as we have had to cancel the cycle due to some sort of contamination. I am n ow left with the dilemma of starting another cycle of having a lap first to remove my endometrioma which is now approx 10 cm and having zoladex after that before proceeding with another cycle. I feel like I am losing all hope.
 
#8 ·
My advice.....try everything your Dr recommends. I had stage 4 endo. I had a tube removed, 2 laparoscopies and laparotomy, Endometrioma removed two rounds ivf. Natural killer cells. After 10 yrs trying I had a total hysterectomy no more pain! I was advised to used a surrogate and egg donor and now have a son. 
 
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