Future implications

Submitted by pocketwitch on April 2, 2008 - 2:43pm
Body: 

I posted at this site once a couple of years ago, and I haven't since mostly because I haven't had internet access. I am twenty four years old with one child and a third degree uterine prolapse. I usually use a pessary that my midwife and I crafted out of beeswax, as beeswax is a natural anti-infectant and I find I can leave it in longer. I tend to get vaginal infections when I use something foriegn in my body.

Anyway, I currently am not wearing my pessary because I need to make a new one, and my prolapse is causing me constant discomfort, even when I manage lifestyle factors and posture. I am posting because I need the support of this community-- I am scared about my prolapse right now. My cervix is out as far as it can go, and sometimes if I do too much it bleeds. I think from the friction of walking. I am so swollen and uncomfortable by the end of the night I can't walk right and I have to take a long hot bath every time. I work at an elementary school and it's embarressing to have to sit down when I am on playground duty, and I dread lunchtime because it's hard for me to walk around and help the kids. Also, I am a single mom, and even when I lift correctly my discomfort seems to be worsened... so things like going to the store and taking out the trash are frustrating.

Sorry to vent, but it feels good to write all that down. The questions that keep me up at night right now are:

1. Does my severe prolapse increase my risk of cervical cancer or something? I mean, given that my cervix is exposed and not supposed to be?

2. I sometimes feel a stretching, tearing kind of sensation when having a bowel movement, even though I use the stool and do not strain. Should I be really freaked out?

Christine

April 2, 2008 - 3:29pm

Wow – you’ve finally returned, Pocketwitch! Women have been going crazy over the beeswax pessary idea ever since you posted. Hope you will stay around this time to answer a few of their questions.

You are in a serious situation and so very young – my heart truly goes out to you.

Here are your options as I see them:

1. Uterine suspension. This can only be accomplished using one of two procedures : (1) uterosacrocolpopexy where they suspend, using mesh, the cervix to the ligaments of the sacral vertebrae. Risks include chronic pain from damaged nerves; new or exacerbated cyctocele due to permanent tension on the pelvic interior toward the sacrum; recurrence of UP. (2) plication of the uterosacral ligaments. These vessels carry nerves and are not made to withstand the “shortening” and “strengthening” of being drawn together and wrapped with permanent suture material. Risks include chronic pain in pelvis, buttocks and legs; recurrence of UP.

2. Hysterectomy. Possible (up to 43%) vaginal vault prolapse will result in need of the first procedure above. Risks include all the symptoms that result from the bowel and bladder having lost their major means of support. Also significant endocrine and skeletal changes.

3. Keeping extremely good care of your uterine prolapse, which means not letting it hang outside to become chaffed and irritated. Cervical cancer is almost always associated with HPV virus, but chronic irritation and inflammation anywhere in the body can result in malignancy. The uterus does eventually shrink, but not before another 30 years or so in your case.

I wish I could help you make this choice.

Wishing you well,

Christine

P.S. Instead of putting your feet up on a stool for bm, lift yourself slightly off the toilet seat into a half squat. Much better anatomically.

alemama

April 2, 2008 - 6:32pm

literally! i really think this ab isolation exercise will pull it all up. Do it everyday as much as you can and you will get stronger and stronger. use the search function to find ab vaccuum or something like that- or look through my old posts- there is even a youtube video link to it.
I really think it should work for you since you are so young- it really takes coordination and ab strength.
I am 28. Sometimes when I think of a lifetime of this I get frustrated- but most days I just pull another tool out of my tool box-

louiseds

April 2, 2008 - 9:14pm

Hi Pocketwitch

Welcome back. I wish I could make this all go away for you. Fear does horrible things, like paralysing you and stopping you from doing what you need to do.

Have you tried a V2 supporter belt? How hard will it be to find your midwife again and get a new pessary made?

Cheers

Louise

pocketwitch

April 3, 2008 - 1:47pm

Thank you so much for your replies. I know that fear can paralyze me from doing what I need to do to take care of myself, and I am working on that. When I have my pessary, it's much easier to do the things I need to do and work towards healing. When I don't, and the pain and my own limitations are constantly on my mind, I tend to disconnect from my body, which worsens the situation.

Clearly, I need to make a new pessary as soon as possible. I am not going to my midwife this time; we've somewhat lost touch and I feel that since I am going to be dealing with this long-term I need to begin to do things like making a new pessary independently.

To make my pessary, I use a diaphram as a mold and create a hole in the middle of the wax for my cervix to rest in and let my period flow on out. I have lost (possibly in a recent move) my diaphram. Now I need to go get fitted for a new one, and I don't know how to approach this. I want a quick and easy trip to like OACAC (an organization that provides women's healthcare at minimal cost), but I am unsure how they will react to my "untreated" prolapse. I went to Planned Parenthood for a vaginal infection several months ago that I got during a week when my pessary was out. The doctors brought in like the entire staff to "view" my downstairs, which was super embarressing and really put me on the defensive. Also, I am on record both at Planned Parenthood and OACAC as a woman who sleeps exclusively with other women, and I am wondering: can they refuse to fit and sell me a diaphram since I will obviously not be using it as a form of birth control? I don't think they are going to be to keen on the "make-your-own-medical-device" plan. And I don't want them to freak out about my prolapse. So what do I say?

Christine, surgery is simply not an option. I know fully that it will not solve any problems for me, especially long-term. And I certainly want more children. My only option is to take care of my body especially well. I am a very low-income single mama, and I admit it is very hard for me to do some of the things I need to do for myself. It has to be a top priority, and it's a challenge to make it so when so many responsibilies (work, school, daughter, etc.) demand my energy and constant attention. One way I have decided to help keep my pelvic floor health a main priority is posting in this forum, and I appreciate everyone's support.

Clonmacnoise

April 3, 2008 - 5:27pm

Pocketwitch,

Just wondering if you could use those feminine hygiene ring non-tampon things to make the pessary. Can't for the life of me remember what they are called, but they are used for periods, have a round rubber ring and a kind of clear pouch that catches the blood.

Judy

Christine

April 3, 2008 - 8:13pm

I just want to put in a word for firebreathing because it’s really effective too. The vacuum it creates is very good, but the drawing of the pelvis strongly back on the in-breath maximally pulls up on the uterosacral ligaments. It’s an easy, and imo, pleasant exercise.

louiseds

April 4, 2008 - 12:26am

Hi pocketwitch

It must be really hard when you feel as if they may judge you, or not treat you because of what they 'think' or because you don't fit their criteria.

Do you have any organisations in the gay/lesbian area that you could go to for help in finding somebody to fit you? There are often practitioners who are openly happy to treat people regardless of their sexual preferences but they just don't openly advertise it, for the same reasons that you are cautious.

My other suggestion is that you ring them first and give them a nickname rather than your real name. Ask them about all these issues. Have a look at their website or other promotion material and look for clues. Only then, make an appointment, different phonecall, different day, real name, when you are happy with them treating you, no matter what they may ask you. You are a person like any other. You have a right to treatment. AND you may teach them a thing or two!

Cheers

Louise

kit

April 4, 2008 - 1:05pm

Pocketwitch, I think you should just go and ask for what you need. If they have the discourtesy of asking why, simply say because it will give you the freedom of choice. If their thinking leads them to believe you want the diaphragm for sex with the opposite, then leave them to their thinking. They do not need to know that what you are really seeking is the choice between caring for your own body vs. having to seek assistance from your mid-wife. You are very young to be so pro-active in caring for yourself in this difficult situation. Good for you. Now, don't give any of that power away by letting anyone intimidate you. Give them only the information they need to help you gain access to the care that you need. I'm not saying to withhold any necessary information. I just don't see this as any of their business.

I’ve had the opposite problem. For ever, my gyns would try to follow me out the door while strongly encouraging me towards their forms of birth control. For thirty years my husband and I have chosen to do it our way. Drove my doctors’ nuts--especially when I would not entertain them with the specifics of ‘our way’. It was none of their business. They love to hand out the birth-control gadgets and pills. I could not take the pills and I would not put the gadgets in my body. I have two beautiful children and managed it all just fine. You have the right to have a diaphragm and they have no right to be so nosy. You have the right to manage your life as you see fit.

And if you are not comfortable being used as a learning tool for the less informed, tell them next time. I’m sure you don’t have to put up with that if it makes you uncomfortable.

Sorry if I'm sounding motherly towards you. I’m feeling motherly and protective right now. My kids are just a bit older than you. I mean only to encourage you to not fear getting what you need. Kit