# Gonal F Questions & lots of other questions....



## lexx7 (Oct 19, 2011)

I'm on cd27 after having had low dose Gonal F, I'm not pregnant so am now waiting for my period to arrive tomorrow.  I was on 75iu for 4 days and then 37.5 for 3 days at the beginning of my cycle and was going to have mild ivf but as I only had one mature egg, I abandoned it and had a pregnyl (5000) shot and tried naturally.  So I'm now about to go for the ivf again with 150iu of Gonal f for 3 days and then 3 days at 75iu and they hope to get at least 2 eggs.

I don't really know where to post my questions so please do move it or tell me where to post if I'm in the wrong place.... 

I'm kicking myself for not asking the one and only fs at the clinic all of my questions on monday when i had the chance, but I'd been kept waiting over an hour and forgotton my paper with them on    

I have endometriosis - I've no idea where or how bad anymore as the laps i had were over 6 years ago.  I had a 4d scan a few months ago and was told if it was bad they would be able to see it and they couldn't so I'm hoping that's ok..?!  I also have myasthenia and IC.  I haven't asked if Gonal f has any effect on endometriosis - can you please tell me if it does?  Is it ok to have Gonal f injections 2 months in a row?  Also, I'm dreading my period - is it likely to be more painful after having had Gonal f and pregnyl or does it not effect it?  And as I had the pregnyl and ovulated (well I assume i did from the pain i had all day) on cd14, will I defnitely get my period tomorrow on cd28?

The clinic I'm at haven't done a scan to check me out before starting again - is this normal?  I also never had any bloods done during this cycle and yet I read of so many going through ivf etc, that have their estrogen levels checked throughout - should I be having this done also?

The clinic are terrible for keeping me informed and I'm hoping I can get to see the fs again next week when i go for the first scan, but he is a nightmare to get an appointment with.  The clinic is predominantly private but I am there as an Nhs patient and this is our one and only attempt of Ivf.  I just wonder if I don't get to see him as I'm not a paying customer    But given my medical history and the complications, I really could do with the reasurance of having every stage discussed, the risks etc and I'm really disheartened and concerned that I'm not treated any differently and am even unsure that the one and only nurse, knows I have Mg and Ic etc. I was found to have ureaplasma at Christmas and just given the antibiotics and when I questioned the safety of them for a myasthenic, she just looked at me all puzzled and I had to check it all out myslef!  The appointment i had where I was given the gonal f and shown how to use it, was with the nurse and each scan was only with her - I only got to see the fs when she was about to inject me with cetrotide and I refused as i knew it wasn't worth going through my one and only ivf chance with just one egg!!  He only came to see me briefly and told me that as i had such a low dose Gonal f then this is what was expected, but he never told me that and I would have had a higher dose had i known it would only produce one!!! If I hadn't have been a tiny bit clued up on this, I would have wasted my chance and been pumped full of these drugs for nothing!!  

I did remember to ask about sedation as I'm concerned about it with having Myasthenia and I was just told that it would be a mild sedation to relax me and so that I don't feel any pain but he didn't say what it was - is this a standard drug and if so what is it?  He said he wouldn't give me anything that wasn't safe for me, but I'm really worried about it as anything that "is to relax" isn't a good thing for someone with myasthenia and I want to check it out first.

Will having 150 and 75iu only produce 2 eggs?  I also don't understand about the follicle growth - when I had the first scan this cycle, I had 8 follicles and yet only one grew - what happened to the other 7?  Could they have been empty?  

(I don't take any medication for Mg nor Ic and endo.)

Apologies if I'm in the wrong place, but if I can get at least some answers here that would be much appreciated


----------



## lexx7 (Oct 19, 2011)

Can someone please tell me if there is a better part of the forum to post the above in?  I'm fairly new to ff and don't really know where is best    Thanks for any help.


----------



## Mistletoe (Holly) (Jan 1, 2007)

Hello - if you have posted on the pharmacist board there are only 2 of us and we are not on here all day, so apologies as I have only just seen this now. Mazv is at work and then looking after her DD until late in the evening.

I have just seen your message and I can understand your questions and frustration. 

I have some experience of myasthenia as I work in a teaching hospital, and I cover ICU, theatres and pain in my job as a pharmacist.
You obviously know that you have to check every drug carefully. I would ask them if your sedation will be done by an experienced, Consultant anaesthetist with a knowledge of myasthenia. You need to be carefully preassessed and planned for - they are used to doing egg collections in fit healthy young women. Otherwise I would not have treatment there. At my clinic a nurse does the sedation and she would not be able to intubate and ventilate if the patient could not breathe for themselves. Sadly amongst many people there is very little experience of myaesthenic patients as it is so rare. You need someone able to take care of your airway should the need arise and facilities to deal with any myasthenic crisis.

Usually they use fentanyl, alfentanil or remifentanil with midazolam or propofol for egg collections, but as there are many drugs available you need to ask them exactly what you will be getting. They often also give non steroidals and metronidazole as part of the procedure - so again ask if any thing else is given at your clinic.

The gonal f stimulates the ovaries and with growing follicles this then in turn secretes oestrogen proportionally to the number of follicles. High oestrogen levels can increase endometriosis growth, but it you only had one follicle then the oestrogen levels probably were no higher than a natural cycle.

The 8 resting follicles, if stimulated with high dose would probably all have developed, but if you had low dose, a dominant one, just as in a natural cycle would take up the drug and the others would fade away. In my last cycle I had many eggs - about 20 to start off with, but for some reason they all developed at different rates and I ended up with 5 follicles at the end of the correct size. In the end, after a couple more days of stimming I did get 10 eggs, 8 mature. The first cycle when they all developed at the same rate I got 22. Each cycle is different and there is no way of predicting exactly how one person will respond, or even to say exactly how two cycles would be in one person - only a rough idea of your response can be predicted and they get more information each cycle and dose that they try. Sometimes they will start with a very low dose if you should respond well on paper, as if they gave too much and you ended up with too many follicles this would also be bad.

They don't measure your oestrogen levels very often in many places. Only places that do intense monitoring like ARGC or if you are at high risk of hyperstimulation syndrome. Follicle size and count is usually enough. Once you have 15 or more follicles it becomes more important to make sure your oestrogen levels are not at hyperstimulation/dangerous levels, when they usually coast for a day or two, or collect the eggs, fertilise and then freeze all, to stop you getting ill.

Many people do back to back stimulated IUI for up to 6 cycles, so if your consultant says it is ok to go right ahead with another cycle then it is ok.

I would expect them to do some sort of scan to check there are no cysts left over from the last cycle, but I am not a fertility specialist and they will advise when you are to come in for scans. They also usually like your lining to be less than 4mm before stimming.

Do ask your fertility specialist if you have other questions. I have answered you of the top of my head with the knowledge I have, but I am not a specialist in all areas and I don't have all your own personal history. 
But I hope I have helped a bit anyway.


----------



## lexx7 (Oct 19, 2011)

Thank you so very much for replying, I truly appreciate it and am so grateful that you know about myasthenia.

I'm really worried after what you have told me, but I'm so grateful that you have brought things to light.  I am going to ring the clinic tomorrow and hope that I can speak with the consultant.  As far as I'm aware, the consultant himself gives the sedation, but he described it more of a relaxant whereby no pain is felt and you are relaxed - I wonder now if it is something like valium? He just said that it would only be for about 10 minutes as I would only have 2 or 3 eggs to collect and nothing is given for transfer....

I'm pretty sure they don't have any facilities to help me should I get into difficulty with breathing, as they aren't connected to a hospital, it's just a small clinic (St Jude's in Wolverhampton.)  To be honest, as I simply get by with the Mg and don't take any meds for it, I haven't thought to ask about back-up if needed, but when I did ask about sedation he just said he wouldn't give me anything that could harm me - but now I'm really not sure....... When I had my intial consultation back in August last year, he told me that he has seen 3 women go through pregnancy with Mg and how they were and so this was very reasuring at the time - I don't know if he treated them for the Ivf or whether it was when he worked in a hospital.  I think if he can't give me an answer and reasurance that there would be back-up then I will have to forget this month and re-think what I am to do. 

There is only one other clinic nearby and that again, although a lot bigger, isn't connected to a hospital and I wonder if they would have facilities to cope should anything happen to me.  Anywhere else is about 2 hours away and so unrealistic for me to keep traveling back and forth and also, the pct only cover 4 clinics.

I'm not even sure that details of what I have had so far have been relayed back to my Gp.

I haven't had a scan - I did say on Monday that I'd had some discomfort in my ovaries and was concerned about cysts, but the consultant just instantly dismissed this and said it wouldn't be!  And there was no mention of scanning to check my lining and they didn't do so before last cycle either.  I've actually come on my period today on cd27 which has never happened and it does concern me as I ovulated on cd14 after having the pregnyl on cd12 at 9pm.  Is this normal after having Gonal f and pregnyl?

Thank you for exlpaining about the effect of Gonal f on endometrosis - I understand that estrogen makes it worse and I just wish the clinic had explained all of this to me as you so kindly have.  Am I right in thinking that as only one follicle grew, then extra estrogen wasn't produced for the other 7 and therefore I was at no more of a risk of endometriosis worsening, than in a normal cycle?  Sorry I'm asking this again, I just wanted to make sure I'm understanding the risks correctly.  I suppose I have little choice if I can't conceive natrualy?  I've had most checks, but never had a scan of my tubes with dye - the consutant just said that if they were blocked, they wouldn't be able to see my ovaries properly and the 4d scan would have showed anything up, I just don't know how much truth is in that.

I think I did ask about the use of antibiotics and anti-inflammortories and he said they don't give them as routine.  I can't tolerate either so do not want them, especially when the former is perhaps for a "just in case."  I will double check this too though as I really do not want them at all.

Thank you again for answering my questions - I cannot express how grateful I am.


----------



## Mistletoe (Holly) (Jan 1, 2007)

The sedation is usually a fentanyl like drug (a pain killing and sedative opiate) and midazolam (which is like valium). Sometimes they use low dose propofol.

You could ask what they plan to use for you.
It maybe that they have assess you as well enough to undergo the procedure there, but I would check the facilities.


----------

