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-   -   Amy's Journey w/God through PCOS (https://www.justmommies.com/forums/f1240-pcos-journals/2094302-amys-journey-w-god-through-pcos.html)

godzgrl4evr September 4th, 2010 02:12 PM

Amy's Journey w/God through PCOS
I am 27, almost 28, years old and have been married for over four years. DH and I have been TTC for about a year now. I have knowingly had PCOS for over five years. I have unusual hairgrowth, like around the lower abdomen and the armpits, so I have to shave constantly. I also have brown thickness on the back of my neck.

I have Diabetes Mellitis and Diabetes Insipidis. The first is sugar diabetes and the second is water diabetes. My sugar diabetes is insulin-resistant.

My journey with diabetes insipidis is this:

Up until the age of fourteen, the Diabetes insipidus caused me to suffer from wetting the bed. I went to doctor after doctor and was constantly told I had urinary infections and got medication for it. But it kept returning. I couldn't go to a friends house for slumber parties because I was too embarrassed for wetting the bed. I was finally given a medication to take each night that picked up what my body couldn't make. It was a certain hormone that everyone's body creates that controls the bladder while sleeping, but my body didn't have it. This medicine made up for that. I was also constantly thirsty. I had to have something to drink almost at all times. I also had to go to the bathroom a lot. This still continues to this day.

It is also suspected that I have XPID.

My journey with XPID is this:

It stands for X-linked polyendocrinopathy, immunodeficiency and diarrhea-syndrome. This disease entials: Infertility, polycystic ovaries, insulin resistant diabetes, and diarrhea that never goes away. Sound like a nightmare? This is what I have to go through daily. And I'm not the only one. Women all across the world live with these symptoms day in and day out. Why only women? Because boys with this illness die before they are 6 months old.

This is a rare genetic disease that falls under Autoimmune Diseases. There are many diseases that fall under Autoimmunity. The most serious but rarest form {of the autoimmune polyendocrine syndromes, which in itself is defined as 'a heterogeneous group of rare diseases characterised by autoimmune activity against more than one endocrine organs'} This is due to mutation of the FOXP3 gene on the X chromosome. Most patients develop diabetes and diarrhea as neonates and many die due to autoimmune activity against many organs. Boys are affected, while girls are carriers and might suffer mild disease. (boys die because it is affected on the X chromosome and boys only have one X chromosome)

To read more on XPID, you can go here.

I will be posting here hopefully often and give updates.

godzgrl4evr September 8th, 2010 09:08 PM

Re: Amy's Journey w/God through PCOS
I finally stopped bleeding, if only for a few days. I started again with the OPK's and checked my CP for the first time. It was easy to touch, which I assume means it is low... plus it was hard-ish

At least what I thought I was feeling was my cervix.

godzgrl4evr September 12th, 2010 01:33 AM

Re: Amy's Journey w/God through PCOS
I haven't been temping the last few days but I have been taking OPK's and they are all negative. I know people say that you can't rely too much on OPK's with PCOS, but I talked to my OBGYN today on the phone, since I don't have insurance to go see him in person and he said that since I am bleeding off and on and don't really have much to go on, he thinks it would benefit me to do them but to be aware of them. I have only had one positive OPK result about 20 days ago and BD-ed over the next few days. This time I am hoping to temp along with testing and see if I can see a correlation. My OBGYN is a PCOS specialist. Besides some women can't depend on them but some women can. Hopefully I am one of the women who can. We'll see.

I have been feeling moody and irritable today and not sure why. I wanted to cry a couple of times. Maybe my depression is acting up.


I felt in the mood a few days ago and fixed my DH a nice meal out of the blue and got intimate. So if I am ovulating and the OPK test didn't detect it... we still BDed. I mention this incident only because it is not normal for me to want to do anything. Due to my health and medicines, my sex drive is almost nothing. my poor husband is very patient with me because he knows how I am. It takes him several tries to get me to come around to even begin to want to do something. It isn't him by any means.. I find him attractive... but I have always been low in my sex drive and my medications don't help me much.

I feel so guilty about turning him down as many times as I do. Or I try to help him out but a lot of times it just doesn't do anything for me. Nothing does. I have noticed though that if he meets my emotional needs, like makes me dinner or sets special plans for us.. or even shows me love throughout the day... I find that I am more likely to be in the mood, so DH tries to do this for me. He is so understanding.

Like I said, I feel so guilty every time I say no to him that I almost cry at times. He deserves a woman who can meet his needs and take care of him. Don't get me wrong, our marriage is good for the most part, it just has issues in the sex department, which can create a big problem.

godzgrl4evr September 12th, 2010 01:43 AM

Re: Amy's Journey w/God through PCOS
Another issue I deal with daily is my depression. Well, maybe not daily... but often. If I miss even one dose of my depression medicine, I feel it the next day. So does my husband. This is another reason I feel guilty. If I feel irritable or moody, he gets the most of it. For some reason, I don't get moody or irritable with my mom, only DH.

He has been so understanding with me and doesn't get mad back. He says he knows it isn't me that is moody toward him. But that doesn't help my guilt. There are a lot of times I want to be left alone and I read or come online or watch TV. Sometimes I would rather do this than spend time with DH. I said that wrong. I'd rather do that than do anything else. I love my DH. He is so special to me and I feel lucky to have him as my husband. I do tell him that.

I have found that I live with a lot of guilt, mostly over DH. Whether it is from irritability or whatever, I often apologize to DH. He has a tendency to say nothing is wrong but I wonder if he is just saying that to make me feel better or if I perceived my mood differently than what it really was. I do that with my mom too. I always feel guilty but I'm not sure what for so I will apologize to her and she won't know what I said sorry for. Is this normal for women with PCOS or depression?

I go to counseling to help me with this and it has helped me a lot, but I still go through it, though not as much as before. DH and I are getting closer emotionally and it has helped my moodiness to calm down. Luckily, he was at work today and didn't get the worse of my irritability today, neither did my mom. I mainly kept to myself to avoid being mean to those I love.

godzgrl4evr September 13th, 2010 01:19 AM

Re: Amy's Journey w/God through PCOS
Today, I am feeling a little better emotionally. I was able to temp this morning and got a 96.2 F. And my OPK was negative. I am feeling a little frisky in the intimacy department.

Tomorrow, my step dad who is like a real father to me is having a heart cath procedure and my mom and I are scared. He has to have this done in order to have a knee replacement surgery in a few weeks. If you read this, please pray for him to make it through without hving to have any other actual heart surgeries? Thanks.

godzgrl4evr September 13th, 2010 01:57 PM

Re: Amy's Journey w/God through PCOS
hmmm... Today I am still a little irritable, according to my mom, though I haven't noticed it, though I don't always. my temp is still low and my OPK is still negative, though it is getting darker.


I noticed that my right nip was throbbing last night... coupled with my moodiness and I noticed today, plus yesterday, I have brown discharge but no CM that I can tell and I think my CP is still low and firm... but I am not certain to that because I am not used to checking it.

I will have to keep an eye on it and BD for the fun of it in case I'm Oing.

godzgrl4evr September 15th, 2010 11:20 PM

Re: Amy's Journey w/God through PCOS
I woke up and took my temp yesterday morning and it was 96.6 and I had sticky CM

Today I had no CM

But I am still going to BD

godzgrl4evr September 21st, 2010 11:22 PM

Re: Amy's Journey w/God through PCOS
Sorry, I have been out of town to see Monday Night RAW!

Anyway, a little update. I haven't been able to do my BBT the last few days because I was out of town, but DH and I BD'ed just in case.

I talked to my main doctor today and she said she can prescribe Clomid for me while working with my OBGYN since I don't have insurance right now. We need to first figure out my blood work and make sure I am still doing good since March or April.

I am excited about this. But she asked me if DH has had any testing and thought it would be smarter to go that route first to rule out any male infertility. The thing is, he has no insurance. And it would have to be done at the hospital.

So I am trying to figure out whether to do that or get an at-home test for DH. I am doing research and asking ladies here.

Well, that's about it for now.

Nayomi80 September 23rd, 2010 07:16 PM

Re: Amy's Journey w/God through PCOS
did you end up working for the hospital to hold the babies?????

godzgrl4evr September 25th, 2010 06:20 PM

Re: Amy's Journey w/God through PCOS
I am waiting to do that until my CASA training is done because the training takes the entire month of October.

I did talk to the hospital volunteer coordinator to clarify some things and she said that they check with each parent first before letting us hold their babies. And we are only allowed to hold the ones that aren't real bad. Plus we will be taking precautions for safety. She also said that before they implemented this program, many new mothers asked about it because many of them live over an hour away and had other children, things like that. She will go into it more during the orientation which will take place in January. They requested this type of program.

The local hospital that has the NICU where I live wants to implement it but no funds to provide it.

godzgrl4evr September 25th, 2010 06:27 PM

Re: Amy's Journey w/God through PCOS
Today, I am feeling better. My classes are over and I aced them. Another one won't start until two weeks from now.

I am leaving to go on vacation this next Tuesday. I am flying with my family to Las Vegas, Nevada. There is actually a lot more to do there than casinos. We aren't going to those.

There's this CSI thing that I am going to participate in. From what I understand, they have three crime scenes that look real where the participants get to search over and do CSI work. I have always wanted to be a forensic investigator. I think it will be fun and I'm looking forward to it. There are a lot of other things to do as well.

My opk's have been negative still. My doctor has agreed to put me on Clomid since my blood work came back OK. Nothing's changed. In fact, my A1C has come down. So that's exciting.

godzgrl4evr October 3rd, 2010 11:01 PM

Re: Amy's Journey w/God through PCOS
DH went in to the doctors office for high blood pressure as it was regularly 160 over 120 for the past two weeks. He is in pre-hypertension and has been prescribed water pills.

His blood results came back and it showed signs of beginnings of kidney failure. I don't know the exact counts or anything but they want him to do a 24 hour urine.

I am in shock right now and I don't know what to think. He is only 27 years old and has never had any health issues. Never had to take medicine. He rarely gets sick.

Please pray for us as he does this urine sample and we find out what's going on. I hope it is just a fluke and the urine comes out fine.

jamiejo October 24th, 2010 03:47 PM

Re: Amy's Journey w/God through PCOS
how is your husband?

godzgrl4evr November 9th, 2010 08:11 PM

Re: Amy's Journey w/God through PCOS
sorry I haven't been here lately. DH has an appointment at the end of the month. His levels are very high and the doctor said that he isn't in renal failure yet... The way she said it scared me. But I am believing in God to heal him and take care of him. Thanks for asking though. Please pray for him.

Lynley November 17th, 2010 09:37 PM

Re: Amy's Journey w/God through PCOS
(((hugs))) I can only imagine how scared you are, hon. I hope DH is able to get those levels back down to normal. Praying for you!!!

godzgrl4evr December 3rd, 2010 02:51 AM

Re: Amy's Journey w/God through PCOS
Thank you for your thoughts and prayers. He has undergone testing, like sonograms and blood work after seeing a specialist, so we don't really know anything yet.

godzgrl4evr January 14th, 2011 08:35 PM

Re: Amy's Journey w/God through PCOS
Update- The specialist wants to do a kidney biopsy. But up until now, his pressure was too high and the doctor was scared to perform it. But we see him this next week and hopefully will schedule the biopsy. His pressure is staying low since the doctor prescribed new medicine.


Now that it is the new year, I am getting serious about my sugar levels. The last two to three weeks, they have been a lot lower than normal. They would normally run around 250 to 280 but are now running 140 to 180. Only twice has it gotten above 200 and I am constantly checking my sugar and taking insulin when needed. But I haven't had to take insulin too often during the day like before.

I am eating better, only when hungry and in moderation and I am more active. I am not exercising like I should be, but I am more active in cleaning and doing laundry, which is more than usual. I have recently lost 4 lbs.

I am also getting closer to my husband and we are active in the bedroom more often, and not just BDing. I am not as focused on ovulation and hpt's like I used to be. I am just letting things happen. For now anyway.

Please pray for me to continue to have the motivation to keep active and eating right.

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