Monday, June 11, 2012

My struggles with PCOS

I thought I'd shed a little light about PCOS. It's a hormonal condition that stands for Polycystic Ovarian Syndrome. It is not very fun and it has caused me multiple problems other than infertility. It presents in different ways and different woman have different symptoms, but ultimately it's an unbalance of hormones because your ovaries aren't working properly due to cysts all over them. When I have an ultrasound done on my ovaries, they always measure bigger and they look lumpy.

I'm going to warn you now that due to the nature of the topic, there might be too much info for you to handle :) If you can't handle talking about periods, cycles, flows....this post is not for you!

About 10 years ago I had started to really notice that something wasn't really right with my body. I didn't really mind at the time though. I actually thought it was great! I only got my period every 6-10 months and it only lasted about 3-5 days. I had no PMS with them. It was great. After awhile though, I started to talk to my doctor about it and they started running tests. About 8 years ago they thought it was PCOS and shortly after it was what I was diagnosed with and I had some options. I could leave it as was for now, but I would need to do something if I was planning on having kids in the near future. After I had a confirmation and then almost instantly I met my husband. We were dating for only 2 weeks when he told me he loved me. We were dating for only 4 weeks when he proposed. We were dating for only 4 and a half months when we got married. It was all very fast and exciting. Somewhere in that time though I had to talk to him about this issue that I had and it was kinda weird that it was going to have an effect on someone else and that they would have an opinion on my inner workings.

We talked about when we wanted kids. I was 24 when we got married and although that is not old, I was feeling the pressure of having as many kids as possible within the next 10 years. At first we decided to maybe wait a year or two and get settled and then try to have kids. While we were in engaged we went to my cousin's baby blessing and he came up with me. He held her and on the way home he said he didn't want to wait. So off to the doctor I went to figure out what I should do.

There are a lot of physical symptoms that I didn't get, which I am grateful for. Most people that have it are overweight, have more body hair, thinning hair, acne. Every time I went in to see a specialist about it, I've seen 3 different OB/GYN's, or just a new doctor, the first thing they say is "You don't look like you have PCOS."
I never know what to say to that. "Ummmm, thanks."

Through all the tests I've had done, they found out I had an insulin resistant form of PCOS and my testosterone levels were through the roof! My LH and FSH levels were not at the right ratio and the didn't go up and down every month. The decision to go on a pill called Diane-35 was made because it was a testosterone inhibitor. It is also a birth control pill over in Europe, but not here. I was kinda weird going on birth control pills to get pregnant, but it worked. I started taking it in May and I think I stopped taking it in July. I got pregnant in August and had Mackinley in May. It sounds so easy and ultimately it was, but I was told that even if I got pregnant, my body might not be able to sustain the pregnancy because my hormones wouldn't work properly. So encouraging! I started spotting around 8 weeks and I was freaked out! It turned out alright and I delivered a healthy baby girl.

As soon as I had her, I was ready to have another one. I nursed exclusively, and my period didn't start up again until she was 9 months old. I wasn't on any meds, but I think the nursing helped to level out my hormones relatively well. I've had miscarriages and when I went to talk to my doctor I quickly was sent to another OB/GYN because I had only 1 child and 3 miscarriages with PCOS. I had more tests done and one came back positive that I had Protein S deficiency. It is a blood clotting disorder. By the time they got the tests back though I had gotten pregnant and they can't do that test while you are pregnant. So I was to be treated like I had it throughout the pregnancy. They put me on progesterone pills and baby aspirin to help prevent another miscarriage and to keep my blood from clotting and maybe causing another miscarriage as well. By the time we were trying to get pregnant to the time I got pregnant with Macey was almost a year. It was a hard year and  my doctor talked about fertility drugs. I was a bit nervous, but I was glad she came on her own. 2 years and 2 months after Mackie was born, Macey joined our family. I know that doesn't seem like a big space to some, but when you try for almost a year, it gets to be frustrating.

After having Macey is when everything went all down hill. I had a TIA scare after I had her and was put on Tinzaparin for possible blood clots for the Protein S deficiency. It was an injection that I had to give myself everyday for 8 weeks. It was horrible. I got retested and they said I was fine and didn't have it. It was a relief, but it was all very traumatic. I was in no hurry to have another baby anytime soon.

About a year after Macey was born I still hadn't gotten over it all and didn't want anymore still. I was actually perfectly okay with having two and only two girls. But, just in case I talked to my doctor about what I should start doing to help keep things under control. They put me on Metformin which is a diabetic drug. The theory behind is that because I have an insulin resistant form of PCOS, the Metformin will block my body from ingesting as much sugar and my body wouldn't produce as much insulin, which would make my testosterone levels stay down, and would help my female hormones be able to work like they should. And they did. After a few months of taking it I noticed a difference. My cycles would shorten every month until they were about 32-35 days. That was a major difference for me! About the same time though everything else went to pot and it took 2 years to figure out exactly what was going on. I had developed a large cyst on the right side. I've had cysts before that were large, but they would go away in a week or so. This one lasted for 2 years! For some reason they couldn't see it on the ultrasound, so it was written off. I was having excrutiating pain during my periods, mostly when I had to go to the bathroom. The pain was extremely severe and it would last for 30-60 seconds. I couldn't move or hardly breathe while I was having an attack. The pain would go away after the first 3 or 4 days. I was given 3 different types of NSAIDs to try and help. I ended up being on toradol and I would take it the first 3 or 4 days. My periods also started to last about 10-14 days and were extremely heavy. I tried to not leave the house the first 3 days because it was so bad. The toradol helped with the length of my cycle and how heavy it was, but not with the pain. Because it got left undiagnosed every month just got worse and worse.

I am already borderline anemic (thanks Mom for that genetic gem) but my iron just got lower and lower because of how heavy my periods were. My vitamin B12 was also getting lower and lower due to the Metformin. It can also block that as well apparently. So, between the 2 things I was tired, no energy, no motivation. I started to take an iron supplement and that did help, but it took a bit longer to figure out the B12. We were having some family issues at the time and I couldn't cope. I went into a sort of manic type episode. I couldn't control how I felt. I was angry with how my marriage had turned out, I was angry with my husband, with my kids, with life. I wanted out. This is the time when we had been trying to get pregnant for about 6 months and then stopped for about 6. I was in no way, in any condition, bringing another child into this mess. I felt trapped. It was horrible. I think we had issues for a month or two before I lost control of my feelings. That lasted for about two months. I tried to just lock myself in the bathroom or go to Lethbridge and hang out with my friends. Little did I know that if I would just take B12 I would feel a whole lot better! We finally figured it out and I was starting to feel better. My life was still the same, but I could cope. I could get myself out of a funk if I got into one. It took awhile to for everyone to feel like we were all okay and we were going to make it through everything. It would've been hard without the B12 issues, but man o man, that was a doozie! Just so you know, Vitamin B12 deficiency can cause symptoms of mania and psychosis, fatigue, memory impairment, irritability, depression and personality changes. So always make sure you are getting enough!

I am grateful for the knowledge that I have gained, even though it was a long hard process. It was the beginning of a new year, a new go at our marriage and our life at home, and we started to try again to get pregnant. We tried for another 5 months and I heard about a surgery that could potentially change my life. It had to do with my leg. I posted about my surgery if you want to read about it :) I knew that it would probably take about 6 months just to get in to see him and then a couple of months to get booked for surgery and then a couple of months to heal from surgery before I could get pregnant again. I was prepared to stop trying again for about a year so I could have this surgery. It was something that I knew I needed and I'm so glad I went for it. 6 weeks after I got my referral from my doctor I was having surgery! They called me a week after I saw my doctor and said they had a surgery open up and to get up there so he could see me. It was like it was meant to be! I recovered extremely well and I think we only had to stop trying for about 4 months in total! It was one of those times that I knew my Heavenly Father is watching over me and knows what I need. While this was all happening though my cyst was still there and bothering me.

I tried to get in to see my OB/GYN before because they wanted to an exploratory surgery and I wanted it done before I had surgery on my leg. My cyst actually burst before I had surgery. When it burst it was about 4 in the morning and I had to go to the bathroom. I got up and was sitting on the toilet and the regular pain began. Then it got worse. It was so bad that I could feel myself starting to pass out. I also felt like I had to throw up. I was so sick for the next couple of days. I didn't really know what happened until a couple of months later. I had surgery and when I got my period 3 days later I was really nervous to be dealing with the pain of surgery and the pain of my cyst. But it didn't come. It was so nice! The next month didn't hurt either. I finally got in to my OB/GYN and he told me that it would have been a cyst that had burst. He apologized for not getting me in sooner and sent me for an ultrasound where they found another cyst on the other side. Sure enough the pain started again. We were trying again and we tried for about another 6 months. By this time I was getting desperate! It had been a long hard go of things the last 2 years, mentally, physically, spiritually. He told me that I should come back in the new year and he would start me on fertility drugs if I wasn't pregnant by then. For some reason I had to go back for something before Christmas and he gave me the prescription and instructions on what I was supposed to do. Jar had just started his new job and it didn't really cooperate so well with his instruction. So I took the first month in December knowing it wasn't going to work because Jar wouldn't be around at all during the time that he was supposed to be. I took it though so I would have a better cycle. I took the second round not knowing if it was going work or not because Jar was going to be getting home in the middle of the time that was supposed to be the 'right time'. I took it hoping it would work, but I wasn't going to be surprised if it didn't.

I took a test. It came back negative. I have a very low patience level when it comes to this though and I tested as early as possible. I waited and tested again on day 28 and it came back positive! I was soooo happy! I was crying and happy and in disbelief! Jar was working, so I just told him over the phone. I think it went something like this: Jar - "So how are you today?" Me - "Tired." Jar - "How come?" Me - "It's hard work making a human!" He then asked if was pregnant and I said I just got the results. Creative, I know, but there's not much I can do when my husband is 1000 kms away! I then called my mom and told her so I would have someone to talk to about it. She had the most info on what was going on with me and the fertility drugs. Not very many people knew, because like I've said, I don't like people talking about me. Especially when it's something very personal and painful. So, when I am okay with people knowing, I will share it myself. I don't like that I can't trust a lot of people to keep my personal affairs to themselves, but that is how it is, so not much gets told. I had told my mom things and so it felt right to include her in on the good news and not just the sad stuff and the complaining and whining. She kept my secret and didn't even tell my Dad. I wanted to keep it a secret as long as possible. I ultimately wanted to wait until our ultrasound, but I was just too big to hide it that long!

Anyways, that is my story about PCOS. I may not look like I have it, but I've had a lot of difficulties with it. I still take Metformin and probably will for the rest of my life. At least I know that I am susceptible to low iron and B12 levels. I know how to manage that. I'm glad that most of my problems have come from the meds and not PCOS itself. It makes me a bit mad sometimes because a lot of could have been prevented, but at least I know I can stop taking the meds if needed or how to deal with it. I know what to look out for. I still don't know what they will do about these cysts. The doctor said once the babies come he will look into it again. I am hoping that it isn't a problem like it was, but now I know what they problem is and I won't go for 2 years in pain like that again.

When I hear of people that say they are going to wait to have children, I just want to shake them and tell them to wake up! I know it's none of my business and I don't ever say anything. I just feel bad because you never know if you are going to have problems getting pregnant or not. I feel bad for people that wait until they are settled and then start trying and it doesn't work for them the way they hoped. Then you get to be older and things get more complicated. It takes a long time to get in to the specialist. You have to be trying for at least a year before they will see you. It is a long year and it is very trying. I know there are people out there that are having issues right now that are similar yet different. It is hard. I don't know why some are blessed with kids easier than others. Some don't get to have any of their own at all. I am fortunate enough to have had two and to have two on the way. Having PCOS has been a major struggle, but I have learned a lot about myself, my marriage, my husband, and my Heavenly Father during this whole thing. And for that I am grateful. 

1 comment:

  1. You are an amazing lady. I am glad to know you.

    Dr. Ken