My Health – an Update, a Story

(Chose a picture of my cat because she’s been my cuddle buddy when I’m not feeling great)

So my close friends and family know that the past 6 months or so, have not been so great for me health wise.

NOTE: This is all female related and I’m fairly blunt about it so if that bothers you in any way.. oh well.

Let me explain.

In the late summer, I noticed that my menstrual cycle was becoming more and more painful (despite birth control), and I was having some pain even off of my cycle. I started being chronically more tired, and had increased headaches. What really got me worried was when my cycle had ended, and the pain did not stop for over a week afterwards. That’s when I started going to the doctor.

My gynecologist first just switched my birth control to a stronger one with more estrogen (it was time for my yearly check up anyways). She thought that my body was just getting used to the estrogen levels and therefore the birth control wasn’t working as effectively to make my periods less painful. Made sense to me. So I got my prescription for a new birth control, made an appointment to see her again after three months, and thought everything would be fine.

Well a week or so went by, the first few days with the new pill were a bit rough emotionally but then my body adjusted. But the pain didn’t stop. The pain was so bad in fact (cramps, pelvic pain, etc.) that I called to make another appointment. I couldn’t wait three more months. I needed to see someone asap.

Unfortunately my doctor was taking time off and couldn’t see me for at least 3 weeks. A little discouraged I took the appointment because I trusted this doctor. She was nice and listened to all of my concerns. When I saw her again, I came prepared. I took those three weeks to document each day, what I was experiencing. Pain levels, where the pain was, and other uncomfortable symptoms. She read every page. And I could tell as I was explaining everything that she had this look of understanding. This look of almost pity, a very sympathetic look. She said that she believed I had Endometriosis. She actually also had Endometriosis. This was a lot to take in. Endometriosis can cause problems such as infertility in the future and I was overthinking everything. (I also read too much on the internet.)

So I was scheduled to see a specialist. In fact this specialist was my gyno’s doctor and surgeon! I was thrilled. SURELY this man would know the answers. Joey came along with me this time, and my gyno was there too. Well after an unexpected and uncomfortable physical exam to check for cysts, he was on the fence of the endometriosis diagnosis. (That’s fun to say). After looking at my notes, he suggested and referred me to see a specialist to check for IBS since I was having some stomach issues as well. We scheduled a laparoscopy just to check everything out if I was still in pain by the surgery date (almost three months away).

I was told to drink a gallon of water a day (totally didn’t happen), take fiber supplements, probiotic, multivitamin, and vitamin C every day.

Next I saw my primary care doctor. It was time to establish one in our new town and about time to see one anyway. I updated her on everything, brought my diary, and hoped for another educated opinion. She seemed 100% sure that I had endometriosis. She made it clear that the pain I was experiencing was not normal “girl stuff”. She also said I didn’t need to see the secondary specialist since the fiber should take care of my problem and they would do unnecessary testing. She was totally right. The fiber kicked in and things went back to normal, well, except my womanly areas.

January came along and I was ready to go into surgery. By now I had given up on keeping track of a symptoms diary. Everything was about the same. Cramps, headaches, pain. I was very nervous. This was it, this was the time to get answers. This was also my first surgery since I was 5 and had my tonsils removed!

There was quite the procedure leading up to the surgery. I had to stop shaving everything, even my armpits about a week beforehand, the night before I had to stop eating and drinking, had to shower, use a fresh clean towel, wait two hours, use these hospital wipes just about all over, and put on fresh clean pjs, and jump into a fresh clean bed.

Morning came and we headed to the hospital around 11, surgery was scheduled for 1:30. Well surgery ended up being about an hour late, we were in the hospital for about 8 hours before we were able to come home. When I woke up from the anesthesia I was incredibly thirsty. I downed a couple of mini water bottles and an apple juice. I forgot that a tube had gone down my throat during surgery. I was fairly out of it and surprisingly to me, couldn’t walk very well. Joey took me home and I gratefully took a nap in our guest room that has a lower bed. He got me all set up with water and such while he went to the store to get my meds. He came back and surprised me with a ton of my favorite candies (including pretzel M&Ms which I thought had been discontinued!) and picked up some soup for me to sip on. That night Joey had to help me in and out of our tall bed, even in the middle of the night for a bathroom break!

That week was pretty rough. I was sore everywhere. The anesthesia made my shoulders and chest sore and tight feeling so it was difficult to even take deep breaths. I was on percocet and tried to limit myself taking it since it’s pretty powerful. Turns out, I was still mostly feeling cramps rather than incision site pain so they didn’t really even seem to work effectively for me. The mixture between the anesthesia and percocet caused my insides to just close up. I was getting hungry at normal times but nothing was leaving my body. I didn’t poop for 5 days!!! I worriedly called the doctor and the nurse told me to grab some over the counter milk of magnesia. I took the max dose and waited. It took the full 6  hours to kick in but boy was I happy. Later in the week the meds made me vomit too and the headaches were rough. Overall it was just a miserable week.

Things seemed to get better after that though. I’d have occasional soreness around my incisions and that was the extent of the post-op pains. I was still having crazy cramps like normal though. We waited two weeks for my post-op and found out that yes, I have endometriosis. Endometriosis has 4 stages of growth based on the lesion sizes. Basically, I’m stage 0.5. Sounds great right? Well, not really. There is no correlation between stage level and pain levels. So someone with stage four, large lesions could feel no pain. And then there’s me. My options are very limited, which was overwhelming and discouraging. My doctor said my options were:

  1. Go on Lupron. Lupron is a depot shot drug that you get every few months. It puts your body on a temporary menopause and when coupled with hormone suppressing drugs is supposed to kill off the lesions. He wanted me to be on it for the entire 6 months you can take it. He said at an earlier appointment “don’t look this up on the internet” haha okay sure whatever. But now I knew that this could help me with my pain and I wanted to be as educated as possible. Before this post-op I did do a little online research and didn’t exactly like what I found. Just to name some of the side effects aside from normal menopause symptoms: thinning of the bones, forgetfulness, convulsions, more pain, etc. So I talked to the doctor and I told him that I wanted to know everything about it. He said “I don’t want to tell you.” Excuse me? I would be spending $2,000 per shot, forcing my body into menopause, and you won’t give me any information? Very sketchy to me. How much do the pharmaceutical companies pay doctors to sell these risky drugs? After much haggling, he finally gave me a very vague, 3-page pamphlet. He really was pushing for me to take this option. To be pain free with the drugs. We did an awful job selling it though and I decided quite quickly that I didn’t want to take such an expensive, risky drug that may not even work. (The doctor even said that it was sort of a trial. “It may work, it may not” kind of thing)
  2. Get pregnant. Joey and I, sure, have been talking about this lately as it seems to be the most natural option for my condition but after a lot of discussion and praying we both think that I shouldn’t have to be pressured to bring a baby into the world just as a solution to a disease.
  3. Learn to deal with it. So far this seems like what I’m going with. I’m trusting God and praying for myself to be pain free without drugging my body or getting pregnant.

 

That’s everything. It’s been rough, especially falling away from doing so many things that I loved. I’m slowly getting back into things that make me happy though, and finding positive, productive things to do with my time.

 

Ladies, if you’re ever having super painful menses, don’t just think that it’s just part of being a woman. There could be many things going on! Endometriosis is probably the most common, but there could be cysts and other conditions too.

Always talk to a doctor!! And don’t be afraid to get more than one opinion.

Stay healthy.

With love,

quirkykali

 

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