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Here's the roller coaster ride I've been on these past few weeks since being diagnosed with POP

Jan 02, 2012 - 1 comments
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pelvic ultrasound

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pelvic organ prolapse

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Pelvic organ prolapse forum

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pelvic organ prolapse (POP)

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uterus

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uterus prolapse

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cystocele

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rectocele

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adult Living Alone

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alone

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POP surgery

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pop



On December 7th I was getting off the bus after a long day at work and blood poured down my legs. I walked home, went upstairs to the bathroom and as I went to wipe, found what felt like a baby's head protruding outside of my vaginal wall.  Needless to say I kinda freaked out.  I kept touching it but had no idea what it was... I couldn't feel anything! Like I would pinch it and move it around, but nothing.  I wasn't in pain at all... I had no clue what was going on.  I cleaned myself up and actually looked at it in the door mirror.  I noticed that depending how I moved my pelvis, it would go slightly in and out, so I pushed it in and closed my legs.  I have a large seroma from a tummy tuck I had done 7 years ago so when I went to talk to the doctor about it I told him I've been having urinary urgency, he said it was probably because my bladder dropped which happens as a woman gets older.  I was pretty offended at the time because I was only 40 and didn't consider myself old at all.  But brushed it off as his arrogance because he didn't believe I still had a seroma after all these years either...  That evening, I was pretty glad he mentioned that because after thinking I'd had a still birth and could have possibly shoved the baby back in, I more rationally thought about the dropped bladder thing.  So I hopped online and found a host of sites talking about POP.  Because of the stage, though, numerous sites said I should get in to see a doctor right away, so I called my sister and asked her to take me to urgent care.  

No one there had ever seen this before... but at least the doctor was aware it existed.  She told me I had uterine prolapse.  She called the Women's Center and asked what she should do.  She said I shouldn't be bleeding so didn't know why that was happening, but handed me a pad and said I'd have to have a hysterectomy so I needed to follow up with my gynecologist as soon as possible.  I stayed by my other sister that night and took off work the next day to try and get an appointment.  I could only get in to see a nurse practitioner.  She confirmed the prolapsed uterus but said my cervix prolapsed as well and told me I'd have to have a full hysterectomy to remove both.  Based on my research, I asked her if I had rectocele or cystocele and she said she didn't notice anything.  She said as far as the bleeding goes that I might have either ruptured a cyst or have fibroids... She did a biopsy of my uterus and scheduled me for a pelvic ultrasound.  The biopsy and ultrasound showed that everything was perfectly normal (no fibroids, no tumors), except that I do have a cyst almost as large as my ovary as well as several other small cysts on both ovaries.  They also confirmed the seroma and showed that it stretches all the way from my right hip to my left hip.  But my uterus was completely healthy! I was determined to see what I could do to not have it removed...  

Meanwhile, I told my boyfriend (of six months) about this... and he basically freaked out.  He went ahead and made an appointment for himself to get checked out.  When I talked to him about this later, he said he'd never heard of this before and thought maybe he did something to me to make it happen.  He said he needed to get himself checked out for STDs, too, just to be on the safe side because he had no idea what caused this.  I tried explaining it to him as best I could, but it was really hard for him to handle... He said he'd be there for anything I needed, but I could tell he was distancing himself from me.  

My sister who works in HR recommended that I file a work comp claim because I was wracking my brain to figure out why this happened to me...  After all, I only had one child when I was 17 who was of normal birth weight, I'm not obese, I'm under 50, I don't smoke, I rarely cough, I have a healthy digestive system (or had, I should say), I don't have a family history of this happening (my mother who had three children where my baby sister was 10lbs 14oz coming out of her 5'2" vaginal frame didn't even have this happen to her and she's 61!)... the only other explanation besides me being a quarter Scandinavian and half European is my job where I do a lot of heavy lifting of irregular items all day for days on end sometimes without any support.  I felt I had no choice but to file...  Back at work with restrictions on lifting anything heavier than 10 lbs, I was taken out of a job I love and put on light duty assignments.  First day back, I experienced bloating so bad I looked like I was six months pregnant!  I called my doctor's office and she asked for me to come in and get fitted for a pessary.  I did that... She had me try it out by walking around the office with it.  It felt fine, but actually didn't feel like anything so I wondered how it could possibly work. She said I wasn't supposed to feel it which meant it was working... so I went home with it.  First time on the toilet, though, it fell right out.  I went back to get fitted for a different one and used the toilet as an exercise to make sure they fit and every one of them (four in total!) popped right back out.  I had read that by level 3, all hopes of repairing by doing Kegel exercises or using a pessary were lost causes, but what did I know?  I was scheduled to see the gynecologist for a surgical consult...

I saw my boyfriend and we talked about everything that was going on...  He's still really uncomfortable about it but I told him I'm completely healthy otherwise, so we ended up having sex... Afterwards, though, he said he felt weird because he hadn't intended to do anything at all...  I kinda felt like he wasn't going to want to see me anymore...

On Christmas, I asked my sister if she wouldn't mind taking me to my consult because I knew she was off work and since it was the earliest I could get in, I had to take it even though the clinic where she was going to be wasn't on a bus route.  She absolutely blew up at me saying how rude it was for me to bring this up on Christmas and that all I do is think of myself.  I was having issues with my bowel that day so, inconvenient timing though it was, ran into the bathroom... and found myself crying on the toilet.  I heard my other sister yelling at her for coming down on me so hard... When I came out, she yelled at me again for being so overly dramatic and running off crying in the bathroom. lol I tried to explain what was happening but she wouldn't listen... She didn't know...  It took us all a few good hours before things calmed down. My sister apologized to me... and I did to her, too.  I told her I would try to be more considerate when bringing this up...  She called a couple of days later and offered to take me to the consult.

I finally saw my gynecologist last Wednesday for the surgical consult.  She said I do have level 3 uterine prolapse, rectocele and cystocele which explained the bloating and discomfort I'd been having.  She said I'd have to have a full hysterectomy to remove the uterus and cervix and attach my vaginal vault to my spine so that doesn't collapse and to repair my bladder and rectum.  She said I'd never be able to lift anything heavy again and I'd never be able to return to my regular job.  She said she'd schedule another appointment to answer any questions I might have and basically walked away as I stood there crying and in shock.  Good thing my sister was there to take me home...  

I told my boyfriend that the good news was I could keep on with sexual activities the way I had been, but he didn't need to know the bad news.  After several attempts to pry it out of me, I finally gave in and told him... He was silent for a really long time... I assumed he'd never want to see me again so I told him that would be ok.  He got upset with me and said of course he wants to keep seeing me... (but things still haven't been the same...)

Back at work that afternoon, I called the doctor back to let her know I forgot my slip for work saying I was there.  She faxed over a slip saying "No restrictions at this time."  My work told me I could go back to my regular job immediately.  Again...I was in complete shock! That wasn't what the doctor just told me hours earlier...  I called the doctor back to ask what was going on and she said "People get fired for putting restrictions on jobs like that. I don't want you to get fired."  I asked her if I was really ok, like does that mean I can go back to heavy lifting and she said yes.  I asked her what I was supposed to do when my stuff would fall out and wouldn't that just make things worse and she said I should just go lay down for awhile and put my legs up...  lol I... couldn't help wondering how she would think an employer would say that would be ok if my doctor tells them I am completely fine and able to do my work.  When I explained this to her, she bit my head off saying to me "What do you want me to do? I'm getting so many questions from them.. We didn't talk about any of this!"  I had no clue what she was talking about so asked her who was asking questions... She said my employer sent over a questionnaire asking when my surgery was scheduled and why it happened, etc.  I told her that was the insurance company and I had nothing to do with that. I tried asking her to just tell me what she thinks is right and she wouldn't even let me speak.  She pretty much just hung up on me...  I was so upset but my sister wasn't around to talk to, so I found a friend of mine who I'd told what was going on with me and sat down to chat with her for a bit to help me calm down...  She really did help a lot, but then an HR rep walked in on us and told me to leave the premises.  She said they don't have any work for me so I had to get my stuff and leave and not come back until they called me.  I didn't understand what was happening... She said the doctor faxed in another notice informing them of my restrictions on lifting.  When I asked about the two projects they had told me before they wanted me to do, they said I would be put on a waiting list for light duty work, but that there were other people ahead of me.  I was sooo confused!  I had no idea what had just happened...  

On New Year's Eve, I wanted so badly to go out and have fun and not think about everything that's been going on, but that morning I woke up with another heavy flow...  Just as I was about to leave that evening, the flow got so bad, I had to keep my sister waiting.  Throughout the night, I had to keep going to the bathroom to clean myself up, so I just stayed put in my chair, but everyone is so used to me being the life of the party and dancing until the sun comes up, I got so many questions about why I wasn't dancing... Guys thought I was lying because I would turn them down for a dance saying I had a medical condition that didn't allow me to dance. I didn't know what to tell them! It seems that the heavy flow provides more lubrication for my insides to fall out... It's all just so... disgusting...  I still did my best to have an amazing time and feel like I succeeded in doing so, but... I feel like I'm alienating myself because this really isn't anything that can be talked about.  People do understand about hysterectomies, but act like it's no big deal... but when I mention the issues with the bladder and rectum, too, a look of horror and hopelessness comes over their faces...

Right now I'm officially still employed, but am laid off without pay.  The work comp claim is being investigated...  I don't have any FMLA time available to me because while I meet the length of time, I don't meet the hours needed.  So the thought that this has happened to me because of work makes me not want to give up my uterus even more...  I just haven't had any idea where to turn to... I was so glad to have found Sherrie Palm's website because if she hadn't already gotten APOPS started, I sure would have!  I just can't believe I've gone my whole life without ever thinking something like this was even possible, much less common!  I have to say I did find two studies that were done that mention heavy lifting in the workplace as being a major contributing factor to POP.  Right now, I'm just trying to learn as much as I can but am absolutely frustrated with the timing of this because like today... no doctors are in!  I want a second opinion and am thinking I DEFINITELY need to have someone work on me who's experienced.  I think I may have found one in my area, but can't do anything right now to get moving on this...  

I just found this forum last night and love it because I've already been learning so much about pre- and post-surgery... but every time I read someone's story of what they've gone through, I cry... I'm so scared! I'm completely alone (my daughter and I had a falling out in August to where I had to tell her to either respect me in my house or move out and she chose to move out and never speak to me again)... My boyfriend is too weirded out by this for him to be any help after surgery... And I don't want to burden my sisters (my one is already caring for my mom and my other has three small children)...  As far as my friends go... so many have offered to help me... but really?  I think that's just too much to ask of anyone who isn't family... I just don't know what to do!  I realize there's really only so much I'm going to be able to do on my own, but is it pride that's making me not want to ask for help?  I wish I had someone to talk to... I feel so alienated...

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by sherrieP, Jan 03, 2012
The attitude from your 1st physician is unacceptable, please look for a urogyn so you can speak with someone who is compassionate about POP. In the meantime send in your questions as they come to you and I'll do my best to address them. . Many women have a hysterectomy that is not necessary because they went to an ob/gyn instead of a urogyn for POP. Doesn't mean the ob/gyn is not a good dr-it's just a matter of this is an intricate condition that needs a specialist the same as going to a heart dr for a heart problem. The fact that your gyn is saying you will never be able to lift anything heavy again is a flag-please see a urogyn! That she didn't take the time to answer all your questions and it was a surgical consult is also a flag! It is important that you have a caring dr who knows what he/she is doing for this surgery. If they can't be bothered to answer all your questions at the begining, it is not going to get better. There are often complictions from surgeries performed by drs who are not specialists in POP.

Just because your mom didn't mention POP does not mean she didn't have problems with it. Many women never tell their daughters-my mom didn't and we talk about everything. It's such a personal area of the body, many are not comfortable sharing info.

It is unfortunate that you are having problems with support from sisters and boyfriend, maybe once you see a urogyn they can connect you with a patient that has gone through this process and you can get some support that way. The most important thing is having help right after surgery. If you explain POP to your sisters (and tell them they might get it too so it is important for them to listen to you) and also explain it to your boyfriend that at least half of all women get POP it may help calm him down. Tell him it is like ED in men (erectile dysfunction), most men didn't used to talk about that but now that the commercials are on TV for pills everyone knows about it. Will only impact sex life when you have surgery or if it causes you pain during intercourse which it does not sound like it is doing. (Some women have pain with intercourse, I did not have any pain.) Try to not focus on whether or not your boyfriend will stay, it is vital that you take care of yourself not worry about him. If he is a good man, he will be there for you-if he doesn't stick around because you have POP, he isn't worth keeping. Would he leave if you had to have surgery for something else? If not, he should be ok with this-it is a health issue, plain and simple. When surgery is healed up you'll be able to do everything you do now. Try not to push him away because of your fears-just keep being your loving self and let him get comfortable with this-it's hard for us to absorb as women so it can't be any easier for men.

If the pessary pops out, it may be the wrong type of pessary as well as the wrong size (there are about 20 types of pessaries). A urogyn can help with this too.


Please allow your friends to help with this-think of it as a way to help the cause-spread the word-it is likely that at least one of the women you are friends with that offered to help will  have POP happen to them too and they will then know who go to for answers!

Sher



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