Fertility drugs and IC Pain

[mouse]

Hi I am really hoping that someone can answer some questions for me. I posted here once before with no response and I really do need input! I went to my fertility doctor today. Both my fertility doctors expressed great concern about me undergoing fertility drugs and fertility testing and the amount of pain it will produce!?! I also have a history of endometriosis and a pelvic floor dysfunction and lately I am constantly in pain. I could tell my fertility doctor was generally concerned for my well being. She is afraid that the medication will make my already existing pain so bad that I will need to be on intravenous pain killers. I have yet to find a pain killer that helps with my pelvic floor pain. ON top of all this I am 39 years old and will likely go through all this and not produce any viable eggs. Since I can not carry the child a dear friend, who I believe is a special gift from god, has offered to carry my child. Due to all these factors my doctors would like me to consider using an egg donor. I am fortunate that my insurance will cover most of the cost. I am really hoping that other women will come forward and tell me about their experience with fertility drugs...Good or Bad...No holds bar! I need to go into this prepared! While I desperately want my own child I also want to have a quality of life and be physically capable of raising this child! And regardless if the child is genetically related to me or not I will be his or her mom! It's funny even as I say that, and I know did down inside it is true, I due feel a twinge of pain or remorse at the idea that this child might not be biologically mine. I guess it's because I've always tried to imagine what my husband and my child would look like and that question may never be answered! Sorry for rambling it is just a very tough and stressfull time in my life:pray:

[mouse]

One last question I forgot to post for anyone with experience using fertility drugs and egg retrieval: The doctor said I would only be on a 10 day cycle of injections & then they would do the egg retrieval. If you did go into a flare from the injections how long after you stoped the injections did the pain last for, how much pain did you experience from the egg retrieval and did you have any long term side effects? Oh I guess I also want to know if treatment increased frequency / pressure on the bladder? Again any advice good or bad would be greatly appreciated!!!

[redsoxfan]

Mouse,

I'm sorry to hear about everything you've gone through. As someone who has struggled with infertility myself I really understand the desire to have your own child. No-one who has had a child easily can understand.

My experience may be quite specific to me - and it is not clear still really whether I suffer from IC or from low level BC and scarring (not that it matters in a practical sense - but I want you to understand where I'm coming from). IVF treatment made my symptoms the worst they've ever been and persist for the longest I've ever had them (6 months very very bad pain with very little relief AFTER I stopped most of the drugs). However, there does seem to be some sort of hormonal link to my problem as I also had problems when I came off the pill (although hormones don't always play a role - I also had problems after a laparoscopy).

I am sure there are others who have had no problem.

I'm sorry it's probably not what you wanted to hear but I thought you'd appreciate the reply. If I could go back in time (if only!) I would not have IVF as I have now conceived naturally and my bladder is causing problems in my pregnancy. Doing IVF was the worst decision in retrospect.

I would say that for me, the progesterone suppositories were the worst bit and you wouldn't have to do that.

Feel free to PM me for more info.

I think it does vary from person to person and it does sound that you would be on a very short protocol compared to the standard IVF protocol (where you down regulate first, then start the drugs to produce eggs, then have egg retrieval).

Red.

[jai2006]

Hi Mouse,

I am 41 y/o and have IC, Endometriosis and have had fertility treatments. I breezed right through the fertility treatments and egg retrieval. The treatment did not affect my IC either way - pretty much stayed the same - I had a goal and made it through.

If you would like to talk - just let me know. I would be happy to talk to you about my experiences and answer any questions you may have.

[mouse]

Dear Redsoxfan,

thank you so much for responding. Any response is better then none. I think I haven't gotten any responses because most people experience were probably like yours and they are afraid to scare me. But I really needed to know and your account is close to what my fertility specialist & I are expecting. Yes I am lucky that she only wants to put me on a short regimen & then see what we get. Unfortunately, while my insurance company covers surrogacy they denied me & now I have to go through a battle of appealing the stress alone is driving me into a pretty bad flare & I am to start fertility shots tomorrow. All my doctors have written letters stating that they do not believe I can carry a baby to term but to no avail! I'ts all so frustrating, especially to finally be so close yet so far away!!!! Really what do they expect. I am thirty nine years old. From a fertility stand point my husband and I are both fertile yet we have never gotten pregnant! In addition, I take 7 different med daily just to make it through the work day...How do they expect me to carry a healthy child and be on all those medications? Sorry for rambling but right now I really hate my insurance company!!!!!

[jai2006]

Mouse,

The minute I got pregnant, my IC went into remission - I was thrilled!!!! My pregnancy was very rough for other reasons, but I was ecstatic to be free of the bladder pain - unfortunately, 3 weeks after delivery, symptoms came back strong, but have gotten better over time.

[mouse]

Oh I forgot to mention that I also go into terrible & long flares from any and all hormones & all procedures like a laporoscopy, cystocopy,hydro, lithotripsy & passing kidney stones!!!! I am finally starting to find relief from my latest flare from Lyrica....Yeah!!!

[llwd]

I'm about to start injectables in another week or so, so I can't answer your question about certain fertility drugs. Many REs, such as my RE, will put you on progesterone regardless of whether you need it or not. I think my IC is somewhat hormone-related, since it started during my first pregnancy. It improved after giving birth to DD. I was terrified to get pregnant again, but during my subsequent pregnancies ending in m/c, I was given progesterone suppositories, and my IC did not worsen. Perhaps it won't be as bad as you think.

[mouse]

Hi

Just an update. My insurance company approved me for my surrogate on Friday so I am so excited:) Now all i need is my ovaries to cooperate and produce some good eggs!!! I started the fertility shots on Saturday. Right now I am taking 225 of follicle stimulating hormone. I guess other meds will be added on because a whole box of meds were delivered to my house. So far so good. I have not felt any real side effects from the meds. Lets hope it stays that way!!!!

[JenAZ07]

I just wanted to say good luck!! I hope you get a bunch of healthy eggs!!

I had some fertility testing done a year ago......HSG and then the CLomid Challenge test and I did fine through the HSG, but did have a lot of pain when I ovulated on Clomid. I unfortanately failed my Clomid Challenge and was worried I wouln't even be a candidate for IVF. 5 days before we were to meet with the RE we found out we were pregnant....and to our surprise...with twins!!! We were shocked...since it was an unmedicated cycle....but guess it was meant to be.

Hopefully you have a good story to share with us soon too!! :smile tee

[mouse]

Hi just wanted to give an update on where we are at. I am done with my fertility shots & went through egg retrieval yesterday. I have to admitt the fertility shots did not put me in a flare any worst then I go through when I am ovulating or have my period and the egg retrieval yesterday was a breeze. Mild cramping nothing more. Unfortunately the outcome does not look as postitive. They retrieved four eggs. Out of those four eggs two eggs were not mature enough to fertilize and the two that they did fertilize are not looking that great :pray:

[JenAZ07]

Oh no! So what that leaves them implanting one egg? Hopefully that is a strong one. It only takes one!!!

[mouse]

Unfornutaley none of the eggs made it to the final stage. My egg quality is very poor. Probably from years of endometriosis..My doc tells me it is toxic for the ovaries. Anyway they are recommending I use an egg donor. They have never seen egg quality,as poor as mine, go on to give viable eggs in future IVF cycles. However, an egg donor cost close to 10,000 if not more and there is no guarantee. So at everyone's recommendation I went for a second oppionion in NY. The NY doctor has been doing some experimental work with medical grade DHEA. He feels I have a 2 to 1 chance of having a child of my own based on the results he has seen in his clinic. I am not sure if I believe him or not. I don't know how I can go to having no chance of having a biological child to 2 to 1 odds in favor of me???? I have been on the meds for a month and have to say something was definitely going on during this months ovulation. I was in so much pain that I could of ripped my ovaries out...Not to mention the lovely burning bladder, abdomincal swelling and increase pressure, sensation, and urgency:cussing: The sensation/pressure on my bladder was soooo bad I don't know how I didn't have a panic attack!!

[StacyFL]

Mouse, I am so sorry that your IVF didn't go better. I have been through 3 IVFs and each of the 2 failures was devestating. I did take DHEA as part of my last IVF cycle (the final shot for us and it failed) and continued to take it after the cycle ended. I think it caused me to flare. If you take it will you please let me now what you think? I really want to take it for fertility purposes (a miracle natural pregnancy) but can not tolerate the pain but I am not 100% sure that is what as making me flare.

Thanks and best wishes to you!

-Stacy

[mouse]

Hi Stacy,

I'm sorry that your fertility cycles have also failed. I have been taking a medical grade form of dhea for a little over two months with no significant side affects. I have had some flares but nothing out of the ordinary and they seem to go away with physical therapy so I think they have more to do with my pelvic floor disorder. I was wondering how long you have been on the dhea and if there was any change in your egg quality or the amount of eggs you had on your ivf cycle with dhea. I have not done a cycle since going on it. The doctor initially told me that it would take four months to start seeing the full affects of the drug. How long were you on it before your cycle and was it a medical grade form of dhea?

[StacyFL]

Mouse, thanks for the quick reply. I took DHEA at the start of my IVF cycle in July 2009. I had the best embryos I have ever had from that cycle. The frst 2 IVFs were in 2005. The second one produced my now 3 yr old son. My first 2 IVFs we retrieved 15 eggs at egg egg retrival. This time we retrived 13 eggs but the fertilization was much better (thanks to better egg quality, per the RE) and the 3 embryos we transferred were all top quality. I have never had any embryos to freeze. My doc even said I have the eggs of a 20 year old. I was 38 at the time. So, yes I do believe that DHEA made a big difference for me. After IVF, I continued to take it (25 mg 3X/day) and I noticed I felt ovulation more, I had more signs of ovulation (much more cervical fluid), and most of all my libido was much improved! I do think it made my PMS worse but that was an accepted side effect for me. I have been off it for almost 2 months now and I think the DHEA made me more hormonal emotionally. But, I hope to start back on it if I can get the IC under control.

What dosage are you taking? Do you plan to

[mouse]

Stacy,

I am sorry that you had to stop dhea because of an IC flare. I too had some intense pain during the last two months but again PT and stopping my work outs seem to really help. My situation is a little more difficult. I am 39 years old, married for 12 years and have never been pregnant. When I had my first ivf cycle in the summer I only gave them 4 eggs and only two fertilized. All eggs were of poor quality. While all my blood levels are normal i seem to have a decrease ovarian reserve. My doctor in NJ feels that my eggs are damage from all the years of my endometriosis going untreated. Endo is toxic for the ovaries. They do not feel there is any chance of me having my own biologial child. The doctor I went to in NY, the one who gave me this medical grade form of dhea, told me he felt my eggs were damaged from an auto immune disorder but he felt with the dhea I had a 2to1 chance of having my own child. So I started taking it in Sept... 25mg 3 times a day but mine is prescription strength. I had to buy it at a pharmacy in the city....Apparently it's his own blend that he is trying to patent. I think ovulation is a little more painfull for me since starting the drug. But I have a history of very painful periods and ovarian cysts so it is hard to tell??? I want to rip my ovaries out every month!!!:cussing: I definitely am having some side affects....none of them positive. I have had some hair loss. My skin is very greasy and I am breaking out on my face, neck and back. Also my throat is always horse. I wish I had more of a libido and energy but I do not.

The plan was that I would start my cycle in ny in January. However, I had some questions for him so I went back for another consult this week. My concerns are that my eggs are so damaged that I don't want to push my luck. My need to have my own child can not be more important then the risks to the childs health given my my age and the quality of my eggs. So I wanted to know if the women in these studies were like me or were they just older and had a history of Premature aging ovaries with no other medical conditions. The doctor had no answers for me and was very annoyed and became loud with me that I was questioning his authority!! Needless to say I left and will not be using him.... How long were you on dhea before you began you last ivf cycle.

[StacyFL]

Mouse,

I started the DHEA when Istarted IVF#3. I was part of a research study that required an antagonist protocol (no lupron and suppression only with BCPs). I have heard that it takes 3-4 months before it bgins to work but I noticed differences that month. I did notice I was losing more hair when taking DHE. It took being off of it for 1 month before it stopped. Once I get the IC under control I may try DHEA again. I had trouble with ovarian cysts when IVF#3 was starting. I almost got kicked out of th study because it would not go away! I know the docs say that BCPs should make cycts stay away but the only time I ahve ever had cysts was while taking BCPs. Go figure!

Have you decided who you are gong to see as an RE since you didn;t like the last one? They all have a God complex. Do you know about IVFConnections.com? It's a discussion board jsut like this one but for people dealing with Infertility, specifically those going through IVF. If you find the group for your area you may see some recommendations for another RE. There is also a board on IVFC for donor egg.

Have a good weekend,
Stacy

[mouse]

Stacy,

Thankyou for the suggestion I will definitely check it out. I no that all docs have God complexex but trust me this was beyond. My mom and friend who were with me are still in shock!! The man is out of his friggin mind! Every time I think about it I have fists of hysterical laughter because I still can't believe what happened!

Good luck with everything and keep me posted! I think I am leaning towards using an egg donor. After the Re became the mad hatter I can't trust anything he said!!!