Remembering The Good Old Days

Today I was reminded by my husband of last Summer. He recalled how just last summer I was able to do so much more. We used to take our kids to a park with a big lake to go fishing. To get to the lake was no easy task. It required hiking down a steep gravel hill, hauling a wagon full of the days necessities. A cooler with food and drink, fishing gear, blanket or chairs to sit on, toys. We would spend hours there, not really for the great fishing, but for the happiness it brought us all to be out there in the fresh air, playing in the dirt and the water. It felt good to have the sun on my face and every once in a while we would get the thrill of catching a 4" blue gill. Sometimes afterwords we would drive a little further down the rolling road to get a scoop of handmade ice cream. My youngest son would fall asleep every time on the way and wake up crying that he missed the drive. I guess the hills lulled him to sleep. At the time I guess I took it for granted. It never occured to me that I would be sitting here today, just a year later, and remembering those days with so much sadness in my heart. Sadness because this summer we didn't go to that lake once.

We didn't go to that lake because I haven't been able to walk a block let alone down the hill to the lake and then back up to our car. I can't walk 5 feet without wincing or limping from the pain. The summer is gone now and we didn't enjoy it at all and it's all because of this disease. I feel resonsible. I feel to blame. I feel guilty. I hate what it's doing to me, but to see the downward slope my husband is on breaks my heart. It breaks my heart to see my kids grow up in such an un-natural environment. No kids to play with. Stuck inside with their mother who is hurting too much to play with them. Shall I list all the other things this disease has taken from me this summer?

We didn't go up to our town square once this summer to listen to the band play in the gazebo while the kids played on the old cannon. We used to do that every Friday night. I would pack up a picknic dinner and we would lay out a blanket and enjoy the food and drink and music and the kids would run around with all the other kids late into the night.

We didn't go see the hot air balloon launch that we usually do twice every summer. It's just a tradition I guess. Pack a picknic lunch and basket and watch the giant balloons lift off and float away until the people in the baskets look like tiny dots.

We didn't go see the 4th of July fireworks display this year. We were able to see some from our house but come on..................it's fireworks. You need to be laying on a blanket up close so that they explode in the night sky over your head! That's how I like to watch them!

We didn't ride our bikes, well at least I didn't and I know my kids only rode them a handful of times. My husband works a lot of hours and doesn't have a whole lot of time for that sort of thing. I used to take them on long bike rides to playgrounds. They loved it. I loved it. It got my heart racing and worked the muscles in my legs that I can't even see anymore.

We didn't camp out in the backyard. Just another summer tradition we have. One night we set up our huge tent in the backyard back by the bonfire pit. We aren't really into ruffing it I guess you could say. We would bring back a small television and vcr and radio. We had all the emenities. That was our version of ruffing it. I can barely get comfortable in my own bed let alone on a air matress.

We didn't go to the zoo. My husband isn't missing this adventure at all, he's not a fan, and quite frankly it always makes me sad to see the animals locked up in such tiny unatural cages. But the kids loved the adventure and loved getting up close to an elephant or a monkey. They loved the whole day. They mostly loved the train ride.

These are some of the things that I missed the most this summer. I spent the summer in the house, on the couch, or in my bed. I lived in my pajamas. I did manage to get the kids out to the pool, but even that was a struggle. Getting the top on and off, and cleaning it were too much for me. It ended becoming one more job for my husband. One more thing to worry about and time that took him away from us.

All that I haven't been able to do, simple things that I did, like cleaning, yard work, I wasn't able to do this summer. It meant that my husband had to pick up the slack. What little time he has off was now bombarded with attention on the kids and picking up my slack. It's been so stressfull on him. It makes me so angry that i'm in this position. I hate myself most days of the week. I think of how miserable I am making him. I see it on his face, in his tone, his happiness is fading. This disease doesn't just affect us as women it affects the people around us. And even though I never asked for this, I can't help but feeling responsible for my family's unhappiness. I can't help but feel to blame. That's where I'm at today. This is Everyday Endo. This is my nightmare.

Day at the ER..........take 5

Well my mind is in a fog but I'll try to give you my best thoughts on this......

The pain over the weekend was pretty bad and getting worse. On Friday I called for a refill on my percocet prescription and for the first time they didn't hastle me or make me come in, they just wrote me a refill. Silly me thought things were looking up. The pain was pretty terrible Friday night, and continued all day Saturday. Sunday started off looking like it was getting better but I started the downslide later in the day. Stress probably didn't help the situation. I won't go into detail but lots of stress at home.

By late Sunday I was in terrible pain, and had been taking care of the kids by myself all day. Baths, meals, homework, etc. I went to bed after I got them in bed. Took my percocet and hoped for sleep. In never came. Even with the percocet running through my veins I was in terrible pain. It was very specific right sided pain. The kind of pain that makes sleep impossible. Feels like my ovary is in a vice. I was up till 5 am. My alarm clock went off at 7:45 am. I'm not going to make it. My husband got the kids fed and we dropped the kids off at school and went straight to the ER.

I got to the ER at 8:45 am. It was an hour and a half before I got called from the waiting room to go to a bed. It was another hour and 45 minutes before I got something for the pain. And the only reason I got it then is because my husband (who had left earlier) came back and got on the Dr.'s asses to help me! When my husband came back in the room I was balling my eyes out. I wasn't expecting him to come back until I called him so he kinda caught me off guard. He asked why I was crying. I explained that the nurse couldn't get the IV in my vein. She had pushed and pulled that fucking needle in both of my arms but just couldn't seem to do it. And I was still waiting for pain medication. That's when he went out and got on the Dr.'s asses. Finally a new nurse came in and within 2 minutes I had an IV. And about 15 minutes later I finally got the medication that would stop the pain in my stomach.

In between waiting and finally getting a bed and waiting for pain medication I was given a vaginal ultrasound. I was also given the neon yellow drink for a Cat Scan even though I just had one last month. I have been to the ER 4 times in the last few months and every time I'm there it's the same thing. I tell them it's my ovary, they ignore me and make me get a cat scan. The ultrasound and cat scan both showed the same thing. I have 2 ovarian cysts. Both about 3 cm big. One is 2.8 cm and the other 2.7cm. But what the doctor seemed even more concerned with was how constipated I am. She thinks that it is adding to the pain I'm in from the cysts. I explained that I had adhesions removed from my bowel during my last surgery on June 4th, and that ever since then I haven't been "going" that frequently. Before the surgery I was "going" every day. They blamed it on the narcotics I've been living on and told me that I needed to take something to help me "go" They gave me a suppository and some drink called sodium bicarbonate. The doctor called it "colon blow"

So I finally get home around 3:15 pm. I drank 1/2 the bottle of colon blow and passed out. I woke up feeling like puking, went to the bathroom and basically just passed a lot of gas and then went back to sleeping. I slept until 7:45 this morning when my husband woke me up. So the colon blow didn't do a damb thing. Great! And quite frankly I don't believe it's the narcotics that are keeping me from going. The constipation didn't start until about a month after the surgery. I've been living on narcotics since May! I think it has something to do with the adhesions that were removed from my bowel, I don't know, maybe it's a combo of both. Whatever it is though I need to find a way to get things moving.

I feel like I'm living in a dreamstate right now. They gave me 2 injections of Diloudid sp?. I slept from 3:45 yesterday afternoon till 7:45 this morning and right now i feel like I'm in a dream. I need to wake up and get going! The next surgery is in 3 weeks. 3 WEEKS! I'm so scared. I'm just so fucking scared! My husband thinks I should just let them remove my ovary. My mother thinks the same. Neither of them has done a damb bit of research on the side-effects of removing both of a woman's ovaries at the age of 34. I have done the research. It terrifies me. I have been told that I am miserable and everyone around me is miserable. Well I'm really sorry to be such a burden, truely I am, but I didn't choose this. I didn't ask for this. The only thing I know to be true is that I need to make the best choices for my body and every instinct in me screams that removing the ovary is going to lead to more problems. It is not reversable.

This is just another day in the life of Endometriosis. The name of my blog is Everyday Endo and todays post is probably no different then the other 5 million women in North America living with this disease. It's a nightmere. The symptoms are intolerable. The side-effects from the drugs are intolerable. The effect it has on the people around us is intolerable. It's all a big fat ugly nightmere. WHY can't someone help me!? I'm 34 years old and I'm faced with losing the last of my natural hormone making capability in 3 weeks. And as much as pleasing the people around me should NOT be a factor in that decision, it is. It is a factor. My husband is so unhappy. I feel like it is all my fault. I feel like if I don't remove the ovary he will resent me. I feel like if I do remove the ovary I will resent him.

Here We Go!

Hi there! My name is Goony and this is my story. I have stage 4 Endometriosis. I've probably been suffering with this disease since puberty, but I wasn't officially diagnosed until I was 30 years old. If you have Endometriosis I would be willing to bet your story isn't that different than mine!
During my teenage years I knew that something was different about my period. It wasn't the same as my mothers, my aunts, or my friends. While they had 4-5 day periods with a seemingly normal flow, I would bleed for 6-7 days, and the flow was very very heavy. I would pass giant clots. I would be in horrible pain. I couldn't function.

In my twenties I started going to gynocologists on my own to try to get some help with my periods. My periods had gotten so bad that I was missing work. I couldn't leave home without a supply of heavy duty pads and tampons and making sure I had access to a bathroom at least once an hour. I would usually spend a day or two in bed because of the pain. I went from doctor to doctor and was told that it was normal. I was given your run of the mill birth control pills that I would take for a few months and then stop because of the nightmare side-effects.

When I was 24 I had my first hysteroscopy/D&C. The doctors found a septum in my uterus and it was removed. I got pregnant just a few months after that operation and delivered a healthy baby boy nine months later. The nine months that I was pregnant was like a vacation because I didn't have to deal with the monthly pain and bleeding. After he was born my periods returned and they were worse. Not a whole lot worse but worse all the same. It was just something I would live with I guess.

When I was 28 I delivered my second child. I did not have a hard time conceiving with either of my boys, and the pregnancies were a welcome vacation from my nightmare periods. I nursed my second child for 9 months and my period didn't return until I stopped nursing, so I had 18 months of NO periods. It was great! But this time, when they returned, it was hell. My periods came back full force and worse then I ever imagined they could be. Not only was I dealing with pain during my periods, but pain throughout the month. I was in pain about 3 weeks out of every month. Debilitating pain

In 2003 I went to see a doctor about my periods and the pain that I was in. I was diagnosed with ovarian cysts and was prescribed birth control. I tried several birth controls like the nuva ring, yasmin, etc. Nothing helped. One day I started bleeding and just never stopped. I blead everyday for 11 months. My doctor prescribed premarin I think to try to stop the bleeding but it didn't work. In March of 2004 I had my first laparoscopic surgery. I was diagnosed with Endometriosis/Adenomyosis/Ovarian Cysts/Pelvic Congestion Syndrome. Well at least now I knew why I was in so much pain! I believe we tried some other pills for a few months with no luck, and in August 2004 I had a hysterectomy. I just couldn't take the bleeding and pain anymore. My husband was missing work every month to take care of our children and me because I couldn't get out of bed. I would wake up in the morning in a pool of blood even though I took measures to try to prevent it, like going to sleep with a super absorbant tampon, and 2 nightime pads back to back. Our matress looks like something from CSI.

After the hysterectomy, the bleeding was finally over. And it appeared that the pain was too. Until 7 months later when that old familiar pain returned. I couldn't believe it. I went back to the doctors and told her that the pain had returned and it was just as bad as before. She treated me like I had the plague and I wasn't too happy about that. I gathered my file and told her she was fired. On to the next doctor!

The next doctor I found listened to me describe the pain I was in, and looked at my file and seemed to agree that the endometriosis was back. I had another laparascopic surgery in June 2005. Endometriosis was found and removed. This time the surgery only bought me 3 months. The pain returned and so did more ovarian cysts. I tried more birth control which only turned me into a bigger meaner version of myself. I was impossible to live with and just couldn't tolerate the hormones. The doctor offered Lupron or Danzanol but knowing my reaction to birth control pills and doing my homework on the side effects of these drugs and their success rate I chose not to use them. I don't regret this decision. I regret that their isn't a better alternative. I was given natural progesterone from a compounding pharmacyst and the side effects wern't bad so I took that for months. Not much help.

In August 2006 I had another surgery. This time a cystectomy. The ovarian cysts were becoming more and more frequent. The pain was unbearable. But I marched on.

In March of 2008 on top of the monthly endo pain I started having an agonizing pain on my left side where my ovary is. But, I had so much going on in my personal life that I just kept blowing it off. I did go to the ER at one point and an ultrasound was done and I was told there was nothing and sent home. A few weeks later I followed up with my doctor and an ultrasound showed a baseball sized complex ovarian cysts. Nice Work ER! How Did You Miss That!? I was told I needed to have surgery. The pain was unbearable and I was given vicodin. So on June 4th 2008 I had yet another surgery to remove the cyst and the ovary. It couldn't be saved. The doctor also removed Endometriosis from ligaments, cul-de-sac, and my vagiinal cuff. He had to remove adhessions just to get to the left ovary and removed more from my bowel. He also removed a large cyst on my right ovary. Whew I'm tired! I knew within a week of the surgery that something wasn't right. I wasn't feeling like I was getting better. The pain wasn't getting better. The same pain I had the surgery for was continuing and it was bad. I went for my follow up 3 weeks later and an ultrasound showed another 4 cm complex cyst on my remaining right ovary. Either the one he removed grew back or it was new, he wasn't sure, but he said that he did his best to remove the one during surgery but that it was in bad shape.

So here we are in September. Just 3 months since my last surgery. I have spent the entire summer lying down and drugged up on percocet. The pain this summer has been the worste it's ever been. I forgot to mention that back in November I started eating a RAW diet. I started taking lots of supplememnts, juicing, drinking green smoothies, became a vegetarian. I completely changed my diet. And all the while becoming worse and worse. That being said, I'm not giving up and will continue my vegetarian diet, and sometimes RAW diet. We'll see. My right ovary has been working overtime since the LSO. It's been creating cysts and absorbing them, or rupturing them faster than the doctors can keep up with. At one point i had 6 cysts on the ovary. I have been to the ER 5 times this summer. My doctor is one of the few doctors at this time doing a new cutting edge surgery using a robot. It's called DaVinci Robotics Surgery, and I will be among the first to undergo surgery using this technique. It is supposed to be less invasive and give the doctor a 3D view inside your pelvis rather than a 1 dimentional view. I'm having a peritonial stripping done on October 13th, along with him removing any adhessions that may have formed that could be contributing to the pain. It's also possible that I have Ovarian Remnant Syndrome. We shall see! All I know is that the pain that continues on my left side is at times debilitating.

Wow! That is a long story huh! If you have already been diagnosed then I bet you have a story just as long. If not, I hope that my story will help you to get diagnosed sooner so that treatment might work better. I've heard that hormonal treatments do work better for less severe endometriosis. I encourage you to speak up to your doctor. Do not let them tell you it is normal when everything in your gut is screaming that it isn't. If your doctor isn't helping you then get your file and leave. The doctors work for us, not the other way around. You have to be your own advocate! Don't just accept what they tell you. Be an investigator! Try diet changes. Try supplements. Try accupuncture or accupressure or yoga if you can afford to! Don't stop looking for a way out. I'm not! Do something to take back control. This disease can make you feel powerless. Take back your power!