Endometriosis Awareness Month

Apparently March is Endometriosis awareness month. I had no idea until I went onto a blog I like to follow called Endometriosis: The Silent Life Sentence. She posted HERE and HERE  about awareness month and inspired me to share my story to help spread the word.

For those of you who have never heard of endometriosis, which I will be calling endo for short, here is a the definition from a Medical Dictionary:

Endometriosis is a condition in which bits of the tissue similar to the lining of the uterus (endometrium) grow in other parts of the body. Like the uterine lining, this tissue builds up and sheds in response to monthly hormonal cycles. However, there is no natural outlet for the blood discarded from these implants. Instead, it falls onto surrounding organs, causing swelling and inflammation. This repeated irritation leads to the development of scar tissue and adhesions in the area of the endometrial implants.

I know that doesn’t help much, but basically it causes scar tissue to form in or around the uterus and other organs. There is no cure and not much is known about what causes it.

 

Some symptoms according to endo-resolved are:

• ovarian cysts
• ectopic pregnancy
• Pelvic Inflammatory Disease
• irritable bowel syndrome
• ovarian cancer
• fibroid tumours
• colon cancer
• appendicitis

The most common symptoms of Endometriosis are:

• Pain before and during periods
• Pain with intercourse
• General, chronic pelvic pain throughout the month
• Low back pain
• Heavy and/or irregular periods
• Painful bowel movements, especially during menstruation
• Painful urination during menstruation
• Fatigue
• Infertility
• Diarrhoea or constipation

Other symptoms which are common with Endometriosis include:

• Headaches
• Low grade fevers
• Depression
• Hypoglycemia (low blood sugar)
• Anxiety
• Susceptibility to infections, allergies

Below is my story. It is long and may be too much info and of course I can’t talk about my endo with out including the infertility process… just don’t say I didn’t warn you. :)

 

When I first started having a period in Junior High I bled A LOT! As in having to change my sanitary items every hour, sometimes every half hour. And it would last for a good 7 days and was very sporadic. Sometimes twice a month. And on top of it I cramped so bad I literally couldn’t move and sometimes would throw up. The nurses in school all knew me well and would thankfully send me home on “medical” so it didn’t count as an absence. It was miserable, I was miserable and it affected my life negatively. Instead of just being able to take some Midol and go I was literally confined to curling up in a ball and crying myself to sleep if I was lucky. I took LOTS of Advil and heating pads were my best friends! Ovulation was also a very painful thing and I knew when it was happening because I would have shooting pains. For a long time I didn’t think much of it because severe cramping ran in the family.But as time went on and after talking to girlfriends I realized it wasn’t normal.

 

I tried to tell people something was wrong with me for years. I went to my first gyno appointment at 16 and was basically told to buck up and that every woman goes through this each month. Not to mention it was a TERRBILE experience and I cried. The doctor wouldn’t let my mom in the room and I was scared. She wanted to put me on birth control, but I didn’t feel good about it.

 

In the next several years nothing changed and I saw a couple more doctors who still kept telling me nothing was wrong and to cowgirl up. I read many articles in magazines and all of them said that if this affects your daily life style then you may have something wrong. Nothing frustrated me more than to have doctors tell me I was fine, but I KNEW I wasn’t. What they say is true, you know your body better than anyone and when it tells you something is wrong, do not give up! I lived on Advil, about 4 every hour and only took it when cramping because I needed it to work. But those eventually did nothing for me.

 

Finally at 18 I went on birth control. It was heaven in a tiny pill! I was angry with myself for not doing it sooner. I knew when I would have a period and it only lasted a few days and was very light with much less cramping. However, I started having heart concerns and of course one side effect of birth control is blood clots, which the doctors suspected I was having in my heart. This was when Ryan and I were engaged and he was concerned and we decided that it would be best if I went off the pill. I was miserable. My body went right back to being a nightmare. One day I was having terrible cramps and was literally paralyzed in pain on the floor crying. Ryan happened to be over and witnessed this. It really scared him to see me in so much pain and agony and he begged me to go back on the pill and I was not going to argue with him. I much rather have heart problems than die each month.

 

I stayed on birth control the first two years of our marriage and we moved to Utah and I needed a new prescription. I found an obgyn and one who actually listened to me. He asked me a lot of questions and the first thing he said was “I think you have what is called endometriosis”. I had no idea what it was, but I can not begin to tell you how relieved I felt! Finally, someone listened and has a possible diagnosis and I am not crazy! But this also scared me! I didn’t like what endo entailed and was not prepared for the next part. He explained that the only way to confirm you have it is to have a laparoscopic surgery. I had never broken a bone let a lone had to have surgery and I am deathly afraid of hospitals, doctors and needles. Despite my fears we booked the surgery a few weeks later.

 

Basically they went in through my belly button and through another small incision in my lower abdomen with a camera and tools to remove the scar tissue aka endo if any was found. They did find endo in and around my ovaries and burnt it out. (It was a mild case in which they also found several cysts on my ovaries, but nothing severe) I was completely unprepared and uneducated about this, but all I knew was that this was suppose to make my cramps much better and I would have given anything for that. I wish I remembered more details, but I do remember it took me a good week to recover. I could not get out of bed on my own for a good week. It was the most painful thing I have ever gone through. And I swore I would never do it again!

 

It wasn’t until after the surgery that the doctor explained that endo can grow back in 6 months after the surgery and that endo can also cause infertility issues. So if wanted to to try to get pregnant we were to try right then. Hold the phone!? We hadn’t really talked about getting pregnant and here we were given a time limit!?  It was a lot of pressure to put on us all the sudden. He did say if we wanted to postpone getting pregnant I could go back on the pill because for some reason ovulation is linked to creating endo and while on the pill you don’t ovulate. We went on the pill for a month or so and decided we might as well try to get pregnant since I went through the surgery and paid the money for it.

 

I was outraged with the fact that he neglected to tell me more about endo and the surgery before hand. We would have waited until we were 100% ready to start trying to conceive before having the surgery. I did not know there was not a cure for this and assumed the surgery was the cure. Again, I was uneducated on the subject and should have learned more. But this is a prime example of doctors not doing what I feel is their job and explaining everything before digging into your body.

 

This was the beginning of a LONG road of infertility for us.

 

After trying for many months (maybe a year, I can’t remember) with no luck I went back into the doctor who then put me on clomid. This appointment was different. Up until this I felt he was an amazing doctor who actually listened and was able to diagnose me, but he seemed so uninterested in me and very short tempered. I felt as if I was a nuisance and all he wanted was to get his experience and money from doing my surgery. My endo had also most definitly grown back and I was back to my nightmare-ish periods.

 

I did several rounds of clomid with no success and hated every second of it. Those pills are divorce pills and made me go crazy! Not to mention I had to get my blood taken each month and I would pass out each time from fear. I had also had some blood work done that showed that I had very low estrogen and progesterone levels and the clomid was suppose to help bump up those levels. However they never seemed to be high enough even on clomid.

 

I did some research on clomid and found other fertility drugs and treatments. I tried to bring those to my doctors attention and he basically laughed at me and told me I could try another round of clomid otherwise it was time to see a specialist – an endocrinologist. And the only one I was “allowed” to see would be up at the University of Utah, a good hour away. We also knew this meant forking over A LOT of money in which we did not have. Ryan was still in school and we were living paycheck to paycheck. So we opted for another round of clomid.

 

This time I did the clomid for 9 months straight. After doing some research I found that taking clomid for long periods of time can cause serious issues such as sterilization! I was very frightened and appalled and immediately stopped taking the pills. I also vowed to never see this doctor again. He obviously did not have my best interest at heart. We also decided to stop actively trying (but didn’t prevent pregnancy) until Ryan graduated that summer and then we would look for a specialist when we were both working and could afford it.

 

Two months later I ended up in my family physicians office with what I originally thought was a cyst popping because I have fallen to the ground in pain from those in the past. But when the pain persisted I thought maybe it was more severe and was possibly appendicitis. He asked me several questions trying to diagnose it, one being if I thought I was pregnant. I literally laughed and said there is no way and if so it would be a pure miracle. He ran several tests one being a pregnancy test. I never imagined he would say these words, but he came in and said I have good and bad news for you. The good is you are pregnant, the bad is I think it is eptopic. (meaning the egg had not released from the fallopian tubes and would require termination of the pregnancy). I was elated, mortified and angry all with in the same minute. Apparently taking clomid for long periods of time can also prevent pregnancy because it forms a thick film in the uterine lining preventing the egg to attach if fertilized and sometimes preventing sperm from getting to their destination. But since I had been off of the clomid, my body still had the higher levels of hormones, but less of the uterine lining – allowing fertilization to occur.

 

To make a long and extremely horrific event short, I lost the baby naturally. When I went in to see my lame obgyn after the miscarriage his nurse, not him, not another doctor, but the nurse told me that with my low levels of progesterone I may have been able to keep the baby if it would have not been eptopic had I been on progesterone supplements. I was grateful for her input, but also in hysterics because there was a chance that if my lame gyno would have put me on the proper pills the second I found out I was pregnant I may have kept the baby. I still to this day try not to dwell on that, but instead took that info and knew it would come handy in the future.

 

After the miscarriage I was so over trying to get pregnant. I never wanted to go through that nightmare again that I had no desire to try any other treatment and was all geared up for adoption, but Ryan begged me to see an endocrinologist. We found one when we moved back to Arizona and got everything lined up to do Invitro aka IVF. We spent a lot of out of pocket money and all I had left to do was order the drugs that were around $5000. I couldn’t do it. I would get sick to my stomach thinking about it and we both decided it wasn’t a good time. It was money wasted in my opinion because I was not ready mentally for it.

 

We continued to not use birth control just in case. Then the day came I needed to see an obgyn for a yearly and was not excited about finding a new doc. A friend gave me a name and for some reason I felt good about him and made an appointment. I wasn’t prepared to go in and get asked a ton of questions, I just planned on the lovely yearly exam. He talked to me for quite awhile and explained to me that he was also a specialist and specialized in endo. I had NO idea. After talking to him we decided to do a few rounds of infertility treatments. This time he monitored my uterine wall, progesterone levels and much more. I went on clomid again, but also took progesterone and femera. He listened and he cared. He personally did all the ultra sounds and exams himself and only allowed 3 months of the clomid. The last month we decided to try an HCG shot to stimulate egg release on top of the other drugs. But when we went in for the ultra sound to see if the hcg released the eggs I had cysts on both ovaries and my uterine wall lining was too thin. {Cysts do not allow the eggs to drop. It instead traps them in the ovaries. Endo causes cysts and low uterine wall lining for some unknown reason} This is when the doc told me that my endo was not going to allow my body to function properly and that we needed to do the laparoscopic surgery. :/

 

I did NOT want to do it. My experience was terrible the first time. However this doctor promised me it would be much different. He uses a different laser that doesn’t burn the endo out, but cuts it out making recovery so much better. After much thinking I agreed. I didn’t count on it helping me get pregnant, but I figured if anything it will make my life better even if it was just for 6 months. I trusted this doctor and had my 2nd laparoscopy last June. He found endo everywhere especially on my bladder and ovaries. He classified it a stage 4 (the worst) in some areas and the surgery took a great deal of time. Much more than he anticipated because there was so much of it. The doc couldn’t have been more right about the recovery! I was up and moving the night of my surgery. I was able to get out of bed myself. I only struggled with being on lots of pain pills and being a little out of it, but physically I felt great.

This is an actual picture from my last laparoscopy. That string of stuff is endo. In my case I had those everywhere attaching my bladder to things it shouldn’t have been attached to. He said I had every form of endo.

 

The doctor gave me a good 3 month window after having the surgery to get pregnant and if we were not successful he would start the testing and drugs again to get my hormone levels correct. We found out we were pregnant in that last month of trying naturally. I was shocked and obviously ecstatic. However, my progesterone levels were low and since my doctor is wonderful and listened to my concerns he made sure to check those levels monthly and put me on progesterone pills.

 

And here we are 7 months into pregnancy and everything is going great! We have 10 weeks left before we get to meet our little girl and I have my amazing doctor to thank for it. I will have endometriosis for my entire life and will probably struggle getting pregnant next time, but I am grateful for a wonderful doctor who listened and took the extra precautions and steps to get us where we are today.

To this day I am outraged with how my first obgyn handled my endo, but I am also extremely grateful he initially listened to me and found out what was wrong. Not knowing was terrible. And having endo is not so great, but I at least I know why my body does the things it does.

 

My biggest advice is trust yourself. If you think something is wrong see a doctor. If that doctor wont listen, find another and another until you find one that you love. We live in America and have the wonderful freedom to choose our physicians and get a second opinion. Trust your gut. Don’t let a doctor dig into you with out doing your own research and getting multiple opinions!