The Doctor's Verdict

Alrighty,

I didn't write about my doctor's appointment yesterday because to be honest, I was quite upset. I had quite the restless night letting my thoughts run wild and only got about 6 hours of crappy quality sleep. It was a very emotionally draining evening that turned into an emotionally draining day. I keep telling myself that it's not a big deal, it's not life-threatening, and I need to stop making such a big deal about it but I can't help but feel overwhelmed.

The doctor told me that I probably have Interstitial Cystitis, which is about every bit frustrating and painful as endometriosis. It also has no cure. He's written a letter to a urologist requesting a cystoscopy. It's a procedure that will involve me being sedated, and then they will apply a local anesthetic to my urethra, and then SHOVE A FREAKIN' CAMERA IN THERE. My bladder is not a filming location for a TV show! AHH. This is so totally gonna hurt isn't it? Or at the very least, feel really really weird. I've been seeking other women who have endometriosis and IC and they've all experienced different things with the cystoscopy. Some had it hurt so bad they needed to be knocked out. Some were just uncomfortable.. So, I'm really not sure what to expect. I have a pretty high pain tolerance, considering that I'm in pain daily and just deal with it. I've been really bitchy though for the past few weeks due to lack of sleep because I wake up anywhere between 1-3 times a night to pee. Last night was actually awesome because I was so underslept the night before that i went to bed earlier, and then only woke up once to go. Fantastic. It's about time that I had a good sleep!
So, as a result I am less bitchy today.

With the progesterone treatment though, I'm back down to 10mg. I was just in so much pain with the double dose that I just went back down on my own last Sunday. I don't remember if I mentioned this the last entry or not.. If I did, I apologize for repeating myself!
It's just as well, since the pharmacy screwed up my prescription anyways. The double dose increased side effects too.. And I've got bleeding gums and my face broke out in acne a little bit. Also I have hair on my face.. Eww. I was rubbing my top lip yesterday going "OH MY GOD I'M GROWING A MOVEMBER!" Lol! Today I pulled out all my chin hairs.. Yuck. I'm so womanly and sexy.

What I don't understand is why my bladder symptoms went away after my laparoscopy.. and then suddenly returned. I guess that infection I thought I had wasn't actually an infection at all? It never was proven after all.. I did 2 urine tests and both were negative but I couldn't produce urine during my first doctor's appointment at the first onset of symptoms.
I will never know what made me so bloody sick.

So, today I'm gonna treat myself and go out with my sister and we're gonna go shopping for a bit. I like the mall. I know where all the bathrooms are.

Hahaha bye for now!

Xoxoxoxo

Pain Management

Namaste!!

So, today (ok yesterday now.. Remember, I'm a nightowl now because of my night job) I didn't have to take any prescription pain medication! I didn't even take over-the-counter pain medication. Yaaay!

I decided to go back down to 10mg of medrozyprogesterone. I woke up yesterday morning around 9am and I had such severe pain that I was curled up in a ball in bed for an hour. I could not lay still and I could not get comfortable. It was terrible. I couldn't take my pain meds because if I take them without food, they will destroy my stomach. I was awake for about an hour before Fred laid against my hurtie parts and his body-heat and purrs eased my pain and my heart <3
So I slept until 1:30 in the afternoon.. Sheesh.. Lately, I've been so physically and mentally wiped out from pain that it's hard to think!! I've been walking like a cripple for the past week and a half.. No more! I will tell my doctor this Thursday that my symptoms worsen with increased dosage of this medication. My bladder symptoms worsened too. On Saturday I walked to work.. I went to the washroom before picking up my prescription at the pharmacy.. Walked for about 20 minutes and felt like I was gonna pee my pants!! The pressure was terrible and so I made a beeling for work and went straight to the washroom. I could not hold it. After relieving myself, I was in a lot of pain. It felt like burning.. Like when you get a UTI almost.. The urgency is terrible. Today I did much better. Less bladder pressure; less trips to the bathroom.
Thank God.
It is so embarrassing that I cannot do a simple thing like walk to work.. Go to the bathroom at a restaurant halfway to work, and then before I get to my destination: have to piss like a racehorse again. What the efffffff!???

There are some other things bothering me that are more personal but I won't get into that. It involves me doing a favour for a friend and said friend not appreciating it.. It's causing a bit of friction.. Anyways! I'm looking forward to two days off from work! Yay! I plan on doing laundry and hopefully going to the gym with a different friend (who appreciates me and everything I do almost as much as I appreciate him!)
I will update some more on Thursday after my doctor's appointment.

Night night!

-M

Things That Keep Me Strong

I have to remember those words "Keep going!"
For awhile there I was so overcome with grief that I forgot to tell myself to keep going. I still thing about my brother every day.. And I still wish I could've said goodbye. I keep a photo of him in the living room and look at it all the time. It keeps me going.

There are also many inspirational people in my life right now.
The number one person I'd like to thank is a very special friend of mine who I love with all my heart. He helped me prepare for surgery, he was there when I woke up, he's always been there to take care of me when I was sick in bed, or in too much pain to go upstairs to get myself a drink to take my Gravol with. He was there to console me when I was grieving over my brother's death, and he's supported me throughout my treatments. I am forever thankful. Words cannot describe my gratitude. Even on days like yesterday, when I was in so much pain I could barely get out of bed... He encourages me to get up and out and KEEP GOING!! But he never pushes me. Somehow, he has the power to take my pain away.

Another person I have to thank is OCWarrior1026. Your thoughtful comments warm my heart and soul. I've been following your blog since the beginning. I've read every single entry and I've wept with you during your battle. I'm rooting for you every day. It means a lot to me that you read my humble little blog! I admire you.

I would also like to thank my Endosisters! Without you, I would have nobody to whine to, ask for advice, or know what the hell I'm doing Lol! You help me not feel alone anymore. We lean on each other for support and share our experiences and our pain while relieving it at the same time. You guys are my rock!

I'd also like to thank Biffy for her positive vibes and making me smile during the hard times. She's gone through her own battles and I admire her so much. Her optimism is infectious and it's hard to talk to her without feeling all warm and fuzzy and glowing inside :)

My family also provides support, although I wish they could be a little more supportive.. I know they do what they can. I'm the only person in the family diagnosed with endometriosis, and the only woman left without children. I also no longer have future plans to try and have children. I have accepted the fact I won't ever become pregnant, and I'm okay with that. I hope they will be too one day..

Also my friends: a great deal of you have been met through work or online, or I've known you for years and consider you my family. You make me smile and every single one of you believes in me and helps me to believe in myself.

And last but not least, I must thank my Fredders! My furbaby! My purring lovable heating pad! He's always there comforting me and snuggling. He helps me sleep at night. I love you Fred! Meow meow!
I love Rascal too although he's more of a flop-on-the-floor-and-love-me cat! Lol!
Animals love unconditionally and purely.

These wonderful souls who have touched my life are who I am thankful for every single day. Thank you from the bottom of my heart. Much love to you!

And to my dear readers: I consider you my friends as well. Thankyouthankyou

Xoxoxo

M.

It Doesn't Metastisize, It Migrates

I had my follow up with my gynecologist last Tuesday.
It appears that my endometriosis is continuing to spread and grow, and my doctor suspects that it's moved onto my bladder causing me to use the washroom a lot (like I did before the lap) and also cause bloating and PAIN. The pain the past two days has been so intense that I have difficulty walking. It wakes me up during the night, and over-the-counter medications do little to offer relief. I continue to go to work and I talk to my co-workers about the pain sometimes but most of all, I joke about it and call myself a "gimp" Lol! I hate whining and complaining, so I figure if I do it in a joking manner that it's alright. They say laughter is the best medicine anyways.

I haven't blogged in awhile, I can't remember if I mentioned that I went back on anti-depressants or not.. In other treatment news, my progesterone dose has been doubled in an effort to get my pain and bladder symptoms under control. I have bowel issues too, and I've been taking fiber daily and probiotics but I still experience a lot of pain. Mostly I have a lot of bloating issues and it feels like my colon ties itself in a knot. It's been going on for well over a week. That on top of having to pee every half hour and having endometriosis pain has become very frustrating. That's where the anti-depressants come in. They allow me to emotionally cope with this disease.

My doctor says that if my medications don't improve my symptoms, that he would like to have a cystoscopy done to look for interstitial cystitis. This is a disease that essentially feels like a constant bladder infection. Petichial hemorrhages or small ulcerations develop in the bladder wall resulting in pain and irritation. A cystoscopy is a procedure done to look inside the bladder to check for these things. I'm pretty sure I'll have to be knocked out for it, since they fill your bladder with water and then go up your freakin' peehole with a camera. I can't imagine that's comfortable..

Since I don't feel a lot of support from my family, and a lot of my close friends have day jobs or live far from me, I don't have a lot of people to talk to about my battle with endometriosis. I recently found an online support group and a lot of women have the exact same feelings and symptoms as I do so I no longer feel alone. I've stopped feeling sorry for myself as a result of this.

I'm beginning to accept the fact that I'm not going to be a mother in my lifetime. With this illness spreading despite hormone therapy and surgery, and the fact that I'm still single and time is ticking away as I get older, I don't wish to have children if it means rushing into a relationship and going through painful procedures such as more surgery and fertility treatments, all the while risking myself for ectopic pregnancies and miscarriages and GRIEF.
There's always adoption.
There's always furbabies.
Many people live happy, fulfilling lives without pro-creating. I can too.

Endo + Infections

It's well known amongst endosisters that we tend to get infections easily. We also tend to overlook some of them because they cause symptoms similar to endometriosis pain.
Take urinary tract/bladder infections for example. Endo causes bladder symptoms as is. I go more often than most people, but I go less often than I did before the lap. Anyways, the fact is, I had a bladder infection that I let go untreated for a few days until I started having kidney pain. I got very ill, and it's all because I thought the pain I had in my pelvis was just from endometriosis. Thankfully, the infection didn't get into my kidneys, but it got bad enough that I had kidney pain, which is the worst pain I've ever felt in my life. It also made me feel sick to my stomach. I never vomited a single time, but I felt like I was going to. It was awful. I can't even imagine what a full on kidney infection would have felt like. I haven't been able to eat anything other than cereal, applesauce, bananas and toast since Tuesday (it's Friday now). I am so tired of being sick. I missed one day at work, and worked only a half day before that. Tonight I'm returning for my entire shift to tough it out through the nausea. Since I'm taking antibiotics now I think I'll be okay. I have pelvic pain still but no more kidney pain. This is the sickest I've been in a very long time. I almost went to the hospital last night. I was actually advised by a nurse over the phone to call an ambulance and go but I stayed home and rested and just called my doctor in the morning. I'm fine. I hate going to the hospital..
It's rather daunting to recover from one ailment just to be afflicted with another. I finally recovered from anemia about two weeks ago and I was getting back into my fitness routine when the infection hit. I still don't know how I got it.. Sometimes I have pelvic inflammation that makes it difficult to completely empty my bladder, so that might have caused it. Women with endometriosis are more prone to infections usually and that doesn't help.
As for the depression, I've been taking anti-depressants for a couple weeks now and I'm feeling better. I had an anxiety attack last night though because I missed a dose. I need to make sure I take them every day. It's just been very hard facing grief every day from losing my brother in July and then dealing with endometriosis and the possibility of being infertile. I haven't had a period since that heavy breakthrough bleeding last month, so I think I have endo somewhat under control. I hope that doesn't happen again!
Anyways, I'm looking forward to returning to work tonight but I'm also a bit nervous since I'm still sick. I think I'll feel better as long as I drink in lots of fluids and don't overdo it.

The Other "F" Word

I haven't told many people about this, but when I saw my gynae earlier this month I said the "F" word. No no not THAT one!
Fertility.
It affects every woman with endometriosis. It also doesn't matter which stage you're in. 40% of women with endo are infertile. 35% of infertile couples who seek treatment are diagnosed with endometriosis. Women with this disease also have difficulties with fertility treatments, and a lot of them seem to make no difference in the ability to conceive. The only treatments that seem to stand a chance are IVF and IUI.
Women with endometriosis also have a higher risk of miscarriage. A much higher risk apparently. I have met some women online who struggle to have a family and they try so hard, harder than anyone else I've ever known. They are determined, strong, and incredibly brave women and I admire each and every one of them.

My doctor told me that because I have endometriosis, my fertility is affected. If I want children, more surgery is indefinite, and to increase my chances, it's imperative that I stay in treatment (the treatment that is supposed to stop my periods) until I'm ready to try and get pregnant.
No matter what, when the time comes, it will be a battle. I will have a hard time. I have ovulation problems as well which make it harder, and unbalanced hormones.
The reason I'm worried about this is because I'm completely 100% single and I'm 25.5 years old. Infertility increases with age and I'm nowhere near being in the position to start trying for a baby anytime soon.

When I was on my vacation, I couldn't help but notice that everyone in my family is either married or has a baby. All my cousins are starting families right now. Ok except one.. But he's a guy and he doesn't have the pressure on him to reproduce like I do. My family is very child-oriented. I think I've mentioned before that they tend to not pay attention to the family members who haven't procreated yet. I haven't told them about my problems.. I've talked to my mom about it and I always end up bawling and she says "don't worry, you'll have children, even if you have to adopt". I know she's trying to make me feel better but it doesn't. I feel like I only have a short time before I reach the point where I have to accept that I'm never going to be a mom. Meeting all my cousins' beautiful children was a privilege and I just want that so bad.. I want to be married and have a baby and a house and a dog and be happy. I feel very lonely these days because I've been working so many nights. At the same time I don't want to date because I have a difficult time finding someone who accepts me and my illness, or someone that I can even fall in love with. I was in a very committed relationship that ended nearly two years ago and even though so much time has passed, I'm not over that person.. And it seems that I just push everyone away that I date. I feel like such a wreck. I'm really depressed and I cry all of the time. I just want to move on in life and I can't. I feel trapped and I wonder if I'll ever be happy.. It seems hopeless some days. After losing my brother and grieving it makes everyday things get me down and this shit with this stupid illness I'm stuck with make it too hard to deal sometimes.
I wish I could escape somehow but at the same time, I cannot lose hope. I think about suicide sometimes but I lost my brother that way.. And I can't do that to the people I love. I can't leave them behind. As frustrating as life is right now, I have to keep going. I've been on the crisis line and found some help on their website but I think I need some professional help? I'm becoming absolutely obsessed with my fertility because I don't know and my doctor doesn't know if I'll ever have children. I have the worst case of baby fever and just a couple months ago, I accepted the fact that if I'm infertile, it's fine and I didn't want kids. Why I suddenly do, I don't know. It's stupid. Maybe it's the hormones I'm taking?

Oh Bloody HELL!!!

Hey folks,

I've been keeping my endometriosis treatmets/rants very up-to-date on twitter. If you're interested in daily updates, follow me @Marcina

So, September has been a very bloody frustrating month. I had a total of 12.. yes TWELVE days of abnormal uterine bleeding. I went on a family vacation to Powell River and bled the whole damn time. I came home and it stopped for a mere two days before picking up again. Last Sunday I had the most painful day, and I was at work and I was passing a few blood clots and it got to the point where I was feeling lightheaded and weak so I called my doctor the next morning. They told me that I should get my butt to the ER if it continued (I didn't. I hate hospitals) and my doc called me Tuesday and told me to double up my medication to get the bleeding to stop. It worked, but because I waited so long (due to being out of town for 5 days, and going straight to work the day after coming back) I had become quite anemic.
So for now, I'm on a special diet, making sure I get a lot of iron and taking supplements and resting a lot. I also think I have a bit of a cold.. I just feel extremely run down and sick sometimes. I have a lot of inflammation in my pelvic cavity due to all the bleeding. I think it really made a mess of things in there. The worst part is having to be inactive for so long. I haven't been able to do any exercise besides walking and that wears me out.. But I'm no longer out of breath when I come up the stairs, My hands and feet are normal temperature and I have color in my face now which is great but I'm still in a lot of pain. Everyday. It's very daunting.
Well, I have to get ready to go to work now, I'll finish this up later.

Bye!