Running out of hope....My story

Kittycat · 10-11-2002, 08:58 PM

I have had PCOS all my life. I developed early, but didn't begin my period when my friends all did. I was 14 when my first period finally came. My second one didn't come until a year later. I had one period per year for the next ten years or so. The longest I have ever gone without a period has been three years, and the most I ever had without inducing it has been three.

I never "looked" like I had PCOS (being thin with no outward symptoms) and at the yearly physicals checkups my mom took me to, the doctor was completely unconcerned with my lack of periods. He told my mother that I was just skinny and active and they would regulate with time. I was otherwise healthy.
Years passed, and I became involved in a steady relationship at 16 that lasted about 4 years, in which we regularly had sex. After that relationship ended, I got into another long relationship that lasted 5 years. We never used protection and I should have been pregnant many times, although now I'm glad I didn't pay for my irresponsibility back then! Years passed, and I never had any periods. (Maybe one a year if I was lucky). I had excess hair growth on my legs and thighs and alittle bit on my chin, which I plucked, but I thought it must be normal. I was always considered very pretty, with a good figure. Every time I would go to see a doctor, they would shrug off my lack of periods.
I met and married my husband in 1997 when I was 25. We wanted to get pregnant immediately, and I knew I should start trying right away because I had a feeling we would have trouble. (Judging from my past experience). I was referred to an RE who diagnosed me with PCOS after taking one simple blood test and an u/s. She assured me I would get pregnant with clomid, gave me a prescription of provera to induce a period and sent me away. I did a cycle at 50 mg of clomid and no egg developed. They bumped me up to 100 mg and still no egg. I was still very hopeful at this point, and started another cycle at 150 mg the following month. Still no egg. Finally at 200 mg I produced an egg! We did an IUI and I didnt get pregnant. We did the same the following month and that too failed. At this high dose I was having terrible side effects, including light flashes in my eyes. Fearing my vision could be permanently impaired, my RE took me off clomid.
We then moved on to injectables. Repronex. They started me out at the lowest dose. One vial per night. There were other women that I met at the clinic that were on the same cycle as I was, that didn't have PCOS. They were all on 2-3 vials a night from the get go, and I wondered after my low dose. I wasn't concerened, because I didn't want to have octuplets or something! Well, on about day 6 I started to have tendernness in my abdomen. Went in for my u/s and the nurse was amazed and scared me by telling me it 'didn't look good'. By day 8 I had about 30 quickly maturing dominant follicles. My RE stopped the injections and tried a period of "coasting" me downhill, and I ended up with 22 mature follies. IVF wasn't an option at this clinic, and fearing I would develop OHSS my doctor cancelled my cycle and we didn't trigger the release of the eggs. Even though I never ovulated, I was on bedrest for two weeks afterwards with ovaries the size of golfballs.
After this eprisode, my RE felt we shouldn't go that route again. She thought a pulsatile gnRH pump might help me produce an egg. I wore a PICC line in my arm for 45 days that was attached to a pump that pumped a hormone into my system. Even though they tripled the dosage over those two months, I never produced an egg. (A PICC line is what is worn for chemo treatments. It's a long rubber tube that is inserted into your vein and runs all the way up your arm into the vein to your heart. And yes, it hurts !)
Needless to say, after all this I needed a break. I was sprouting more facial hair and attributed it to the treatments I had been through. I was also having hypoglycemic symptoms. I decided to participate in the Insmed study for the 9 month clinical trial for INS1. For two months I was sure I was on placebo, but then I got a period. I figured it was my yearly visit so I dismissed it until another one came EXACTLY 30 DAYS LATER! Then another! And another! I had 7 periods in a row and I also experienced other hormonal changes. The strange thing is that the hair growth didn't improve at all, in fact, it was seeming to worsen.
I am now with a new RE. During the Insmed study I was informed that I was hypoglycemic. The INS1 helped this, but after the study it was no longer available. (It was very hard going off that wonder drug! I am really disappointed that Insmed dropped it, too!). I am now taking metformin and getting ready to start infertility treatments again. I began met in early August and it has helped tremendously with the slowing of the hair growth! However, I'm still not menstruating, and judging from my BBT's I'm definately not ovulating either. My hope is that clomid will work for me this time, being in combination with metformin. I'm now 30. DH and I are hopeful, but I can't help but be discouraged. I REALLY want to have a baby! I just found out yesterday my best friend is pregnant with #2. While I am thrilled for her, it reminds me of my situation yet again. I am watching all my friends' kids growing up... they grow SO FAST and year after year I go childless. I can't believe it when I see my sisters' two year old-it's like he's growing before your very eyes! I love them to death, but I dont know how much more I can take. Year after year I attend baby shower after baby shower.... watch the first steps of my friends' kids, rejoice over their first words and buy them toys and clothing for their birthdays. I laugh over their funny sayings and I'm often the first one told when yet another baby is on the way. My friends are anxiously waiting for me to conceive, as is my mother and my family. If it ever happens, what a party there will be!
I trust God and I know that He is with me. He has a plan for my life and He is good no matter what He chooses for my life. I must trust in Him, no matter what He has or doesn't have in store for me.
God bless all my cysters and know that being thin doesn't constitute an easier/ less severe case of PCOS. I wish it did!

GingerJ · 10-13-2002, 06:34 AM

Hi Kittycat,
I believe that all things in life happen for a reason and that if you are challenged along the way it is because you are a strong and able person who will be able to cope. Good luck with the Met/clomid combination and I so hope that you are blessed with a child. I think that you have proven you can cope!
We'll be waiting for an invite to that party....!!
Jen
xx

Chrissy · 10-14-2002, 10:31 AM

What an experience you have had! I am so sorry for your struggle. This PCOS is such a crazy and difficult thing to live with. It sounds as if you are doing well and embracing the future though, a great example for those newly diagnosed and starting their journey. Good luck with the MET/Clomid combination! Keep us posted on your progress! God BLess!
Chrissy

pcc10012 · 10-14-2002, 12:52 PM

Thank you for sharing your story. It's amazing how much you've been through! I'm surprised you weren't prescribed met earlier, but it does seem like a relatively new treatment on the ttc front.

We're kind of in the same situation although I've only been ttc since Jan '02. I have 2 failed clomid rounds and started glucophage the first week of August.

I have also noticed a huge slow down in the hair growth on gluc! Granted I didn't have a ton to begin with, but it always bothered me and I'd wax, bleach & tweeze (upper lip). I haven't waxed in like two months now!

I still haven't gotten AF or ovulated on met, have you? But I'm hoping the hair reduction is a sign of it working somehow. I'm currently taking provera to bring on AF and try clomid again, this time w/ the gluc. When will you start clomid again?

I hope blessings are on their way to you soon. Don't be too discouraged!

pc

lana_30 · 10-14-2002, 02:50 PM

KittyCat,

I just went to the baptism of a good friend's baby yesterday, so I have some idea of how you feel. I have only been TTC for 15 months now, though, with two failed rounds of Clomid (pre-met), so I haven't experienced even close to the same ordeal that you have. You must be a very brave, hopeful person to keep fighting the good fight year after year.

I have a similar profile to yours - normal weight (though a tendency to gain easily), some unwanted hair, rarely AF or O on my own, not insulin-resistant. I also started met in August and AF arrived about 8 weeks later. Judging from symptoms before AF's arrival, I think I O'd during that cycle.

I am waiting to see what my third round of clomid (100 mg) will do now that I'm on met. I am on day 16, and an ultrasound on day 13 still showed no follicular growth. I will let you know what happens. I am feeling pretty hopeless, but I will try to follow your good example.

Wishing you the best,

Lana_30