So FRUSRATED!!!!

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So FRUSRATED!!!!

Postby missgamecock » Sun Oct 04, 2009 03:09 pm

WTH is wrong with my uterus? I mean how can I constantly have bleeding with an IUD and continuous BCP???? I know the drs said I have pathologically/surgically confirmed endometriosis and suspected adenomyosis. The only way to confirm the adenomyosis is take out the uterus and send it to pathology. Despite having horrid pregnancies, I am totally not ready for that step yet. Sometimes I wish I had a normal private sector job where you can get short term disability. They don't have short term disability for federal employees. You can only do advance sick and annual leave. So I have to save up my leave. Regardless if I save it up 8 weeks for a hysterectomy or another baby. It takes me a couple of years saving ALL my leave. However, I am working on a deal of moving to the local VA hospital a half mile from my house in the spring. All I have to do is prove I can handle the software/systems on my own (got the contracting part down pat). Which I am doing well on. My job is so much less stress and way way more supportive than my previous job. They were awesome with me being out for the flu. That will help with another pregnancy. I am not sure if I could get a deal where I could work from home part of it like I have with Cate and Sara. You can access the systems from home. I am not sure how much they would work with me on it. Sara is out of daycare in August of next year. I am thinking it will be at least 2 years before we can have another one. One because I have to build up leave and two because of waiting to have Sara out of daycare and getting a new house.

Anyway, bled for 13 weeks after Cate was born. Yes I know I should have called my obgyn. I figured it would be like Murphy's Law and would stop as soon as I called. Yes, my endo dr already scolded me for that. I knew at 8 weeks my endo was back with a vengeance and I would be seeing my endo dr for surgery. I had a lap and removal of endo on May 7th. Bled May and June. Started Prometrium on my own thinking maybe my progesterone was low. It immediately stopped. Then it starts again. I never know when. It is ruining my clothes! I am sick of wearing pads! I was supposed to take the prometrium days 12-21 of the pill pack. However, I don't have regular cycles anymore so I don't know where I am at any time in the cycle.

Had bleeding off and of ever since. I start prometrium (progesterone) and it goes away. Only to start up again later. Last night it started AGAIN.

I have been meaning to make a GYN appt about this but have been lazy and busy with Cate's issues. I am going to call tomorrow and make an appt. I hate having my hand forced in this. I know he is going to tell me we don't have much time as far as another baby or the hysterectomy. (Simply because he has told me that before and my endo drs and pcp have told me the same). If I have another baby (it will definitely be my last as I always wanted 4 and no more), he has already agreed to do a csection/hysterectomy because of my issues. I know don't freak, but pe pregnancies are all I know anyway. I always laugh when he gives me the paperwork with the schedule of appts/USs/tests because I have my own schedule developed by the peri. He said if I wanted to get pregnant we would work through it like we have before. I know the deal. I know what to call for and I am a very compliant patient that he doesn't stress out about unlike some of his other patients. He has told me that he knows and trusts that I will call him. If I can't get in touch with him (never happened but could), I would call my peri. My peri has even offered me her personal cell phone number when I was pregnant with Cate in case I had issues.

I hate endometriosis, adenomyosis, and PE. I feel like I got all the bad woman genes in my family. I remember my mom talking on the phone to a friend when I was a teen. She said ever since she had my sister Brandy (youngest) that her periods were very light and one day long. My sister Brandy hasn't had a period since she had my neice FIVE YEARS AGO. WTF? My mom had pe with all three pregnancies. Never as bad as I did. She was just delivered at term. I'm the only one that has never gone to term in my family. My sister, nope she went 5 days late and told me how lucky I was to get to have my babies early? She had a normal pregnancy.

Sorry to vent. I'm just having a it's not fair moment. While the knife sharp endo pain is gone thanks to my surgery in May. I am still having the adeno symptoms right now.
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Re : So FRUSRATED!!!!

Postby tree » Sun Oct 04, 2009 06:50 pm

This sounds like it totally sucks. I bled for eight weeks after Mary Beth was born, but at least a D&C and a round of nasty drugs cleared it up. I would be pulling my hair out in your situation. I hope you are able to resolve it somehow.
It does stink to get all of the bad genes in the family. I did actually yell at my Mom once for all of the wonderful things I inherited... She laughed, which helped.
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Re : So FRUSRATED!!!!

Postby cheleandcallidora » Mon Oct 05, 2009 12:44 am

I am so sorry to hear you are going through all of this. I really feel for you. I hope things clear up soon! HUGS!
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Re : So FRUSRATED!!!!

Postby mommy1st » Mon Oct 05, 2009 05:43 pm

Sabrina,

Í'm so sorry!! I too have always felt like I got the bad women genes in the family because my sister just has to blink and she gets pregnant! Me, COMPLETE OPPOSTITE!!
Have you called the dr. yet, what have they said? When are you going to see them?
Keep us updated and hope you feel better!
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Re : So FRUSRATED!!!!

Postby missgamecock » Mon Oct 05, 2009 10:25 pm

I broke down and called today for an appt. Poor receptionist thought I was calling because I was pregnant! I said UM GYN appt please. So I see him on the 16th at 930am. I am kind of worried he is going to say my hand is forced in this. A friend of mine had very similar issues (without the pe). She just had a hysterectomy 4-5 mos ago. She said they upped her to 4 BCP a day!!! She still had the bleeding. I just want to get through 2 years and if we want to try again then, we can and be done with it all. I don't want to give up and then always regret never having that last baby! I know I will regret it the rest of my life. I do know if I did have another one, without a doubt, I will be signing a csection/hysterectomy paperwork as soon as my obgyn allows. He has already agreed it was a good idea in my position. I know I wouldn't regret another one, although everyone arounds me thinks I am completely nuts with my history. You try to explain to them and they don't get it. I don't know anything BUT a pe/pih high risk pregnancy. I think I would be scared and worried to death if I had a normal one. I feel like I have a pretty good dr team that will not take chances. My ob pretty much knows how to lay down the law with me like he did with Cate. We have two regional perinatal centers with level 3 nicus that my insurance does cover. It used to only be one, but now they cover both. Ugh I hate this.
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Re : So FRUSRATED!!!!

Postby mikeys mom » Tue Oct 06, 2009 04:40 am

Okay I am so off the pregnancy thing... I know what my decision would be.. Sorry you are going through this though.

Take care,
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Re : So FRUSRATED!!!!

Postby ladybug76135 » Tue Oct 06, 2009 08:48 am

Sabrina,
My sympathies. I cannot imagine what you're going through. I have a mild case and I'm miserable. You must be in living *.

Can you do anything temporary like Lupron? My best friend took it to stop her severe, constant bleeding from endo. I know it puts you into temporary menopause. I'm just not sure about the return of fertility. I know it helped her delay the necessary hysterectomy a couple of years. I'm not a doc, of course, just offering a suggestion from a friend's experience (just putting the disclaimer in so I don't get in trouble).

Hopefully they can find something that helps you but will allow you opportunity to have one more.

Good luck.
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Re : So FRUSRATED!!!!

Postby missgamecock » Tue Oct 06, 2009 09:32 pm

Thanks Robyn, I appreciate the help. I have considered Lupron. It is not for me. Too many side effects and once you get it, you can't take a shot back. Mainly the issue is too much bleeding. Most of the pain was taken care of with my lap in May and is tolerable. It's just the bleeding is driving me crazy. I have been wondering if that is one of the reasons why I am so tired all the time. I think I will be getting me some blood tests done. I think I have a hormone issue as well.
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Re : So FRUSRATED!!!!

Postby audrey s. » Wed Oct 07, 2009 03:03 am

quote:
Originally posted by missgamecock

Thanks Robyn, I appreciate the help. I have considered Lupron. It is not for me. Too many side effects and once you get it, you can't take a shot back. Mainly the issue is too much bleeding. Most of the pain was taken care of with my lap in May and is tolerable. It's just the bleeding is driving me crazy. I have been wondering if that is one of the reasons why I am so tired all the time. I think I will be getting me some blood tests done. I think I have a hormone issue as well.



Sabrina, this is what adenomyosis does. Honestly, although it's difficult to diagnose, I think you've referred to it before in your situation. Ablation or embolization do not work with adeno, and it may well affect your ability to conceive or carry that final pregnancy you've said you want.

I'd never heard of it when I had my hysterectomy for my ovarian mass (and stage IV endo, but that's a whole 'nother story). However, I had severe adeno and severe anemia, with my hemoglobin hovering in the 7.5 range without me realizing it. I know you've wanted to try again, but maybe your body is saying, "it's time" with this. The IUD can exacerbate it, too, and it does not respond to hormone therapy.

There's a lot of info on adeno on www.hystersisters.com/vb2 and you might want to check out the "Options" forum for more information. But if adeno is the issue, there just aren't a lot of good alternative treatments out there. Unfortunately. :(
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Re : So FRUSRATED!!!!

Postby missgamecock » Wed Oct 07, 2009 07:25 am

Thanks Audrey. Kind of thought that was the situtation. It still SUCKS!
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