Rectocele...and Cystocele!!!

Submitted by caterpillar7 on June 29, 2007 - 6:33pm
Body: 

Hi ladies,

I posted here a few weeks ago regarding being 'unofficially' told that I have a rectocele. (I'm the one who is 28, hx of bulimia and vulvodynia, no kids, etc.)

So, over the past few weeks, I've had a bunch of appointments - ultrasound, MRI, etc. I finally went for my consult and formal appointment with Dr. Whitmore in PA.

Here's what's going on with me. I have a large dermoid tumor on my ovary that's causing a lot of discomfort and pain. This is turn is basically putting pressure, and screwing up everything that wasn't already screwed up down there. I have a minor rectocele, and a cystocele (I think she said Stage 2???). She does not feel that I should have surgery at this point, or need a pessary.

And she also thinks that I have something called IC (Interstial Cystitis, or something). Apparently, this often goes hand in hand with vulvar vestibulitis, which I've had for YEARS. The IC could be making it all worse.

The plan is that the tumor needs to be removed. Apparently it's over 5 cm, and I'm a small woman. While it's being removed by one of the gyns, she is going to try and do an explorative study of my bladder (blow it up and check it for cysts, ulcers, etc), at the same time. My consult with the gyn is in a few weeks, although I'm going to try and make it sooner......this stupid tumor is causing me pain, and I feel that it's making my (so far) minor prolapses, worse!

I've been trying to do the posture. I'm also trying not to be depressed about all of this. After I have the surgery for the tumor, I'll probably have to go back to Physical Therapy which is 2 hours away from me, and costs almost $200 a week (my insurance won't pay). I just spent a year going to them, and now I'm worse off.

I go to the Gyn about once a month for my vulvodynia, you'd think someone would have recognized some of these problems before they got so bad!!!!!

Any feedback you have on any of these issues would be greatly appreciated!!!!

nicole

louiseds

June 29, 2007 - 10:23pm

Hi Nicole

Sounds like you have a much better picture now than you had a couple of weeks ago, and it looks like the tumour is a major cause of your discomfort.

If it were me I would be hesistant to let them do anything exploratory during the tumour surgery if they can do it later from the outside, even if they have to do it with a laparascope. Find out what exploratory surgery means, ie do they just poke around in the space available or do they have to cut anything? On the other hand there may be things they can see while you are cut open that would not be obvious any other way.

I would also be making sure that a urologist (or perhaps urogynaecologist) is involved when doing anything to do with my bladder, not a straight gynaecologist.

I would also be asking my doctor some very specific questions about the conditions they are treating, and the procedures they plan to do. Some preliminary Internet research by you will help you to familiarise yourself with some of the language they might use in explanation. If they can't explain it to you to your satisfaction, ie if you don't understand some fo the technical language, ask where you can get appropriate information sheets, so that you fully understand what is going to happen, and dont have to make decisions on the hop, and don't give them permission to do anything you have not specifically assented to.

You might think this is paranoia. I call it looking after the interests of your own body and only signing consent for surgery forms when you fully understand what you are consenting to. You are the one who will have to live with the results of any surgery.

I am not telling you to refuse the tumour surgery, not at all. It sounds like it will make your life much better. Just ensure that they don't do *anything* they don't have to do, that can be done afterwards if necessary. It may be that removal of the tumour will solve 80% of the problems you are experiencing. In my experience vulvas and urethras and bladders can take some time to recover after having problems. How about leavng the investigation of the bladder until some months after the tumour has gone and your body has recovered from the surgery?

I and others have posted lots of info about vulva pain and UTI's and stuff, and multiple ways we have succeeded in getting on top of them in earlier posts. You may have tried them all, but it is worth investigating just in case you haven't. Just use the search box on the left to search for them.

Good luck, and stay in touch.

Cheers

Louise

paige

June 29, 2007 - 10:34pm

Hi,
I read your story and I am glad you are getting some answers. I agree with the last comment and you need to ask a lot of questions. I wouldn't run the other direction if they suggest other procedures, just make sure they can make a good case for it. I would hate for you to decline a procedure that may be medicallly necessary. Surgeons are good at saying whether a procedure is life-threatening or simply a choice. I saw several surgeons after deciding on my prolapse surgery- all of them had different opinions on what kind of surgery they would recommend, but all of them offered me alternatives such as pessaires, etc. My prolpase was worse than your sounds, but just don't let yourself get pulled to one extreme or the other when it comes to surgery or not. I think if you can live with a problem then don't get surgery, but if it is unbearable, consider your options.
Good luck.

caterpillar7

June 30, 2007 - 9:44am

You are definitely right about doing research, and being your own advocate.....I am trying to do as much as possible, which is why it really helps me to get your feedback.

The removal of the dermoid tumor is pretty much a necessity. It's not like a regular ovarian cyst that can absorb back into the body, it will keep growing, and can get to the point where it cuts off blood to the ovary and kills it.

The plan is for me to have the tumor removed by a gynecologist, and at the same time (while I'm sedated) to have Dr. Whitmore (who is a urologist) check out my bladder. This way, I am having 2 procedures in one, and they would only have to use one incision. I think that the procedure for the bladder, is that they inflate it, and use a laproscope to inspect it for ulcers/cysts, etc.

I actually feel pretty confident with the doctors. The place that I go to for all my gyn/uro needs is the Pelvic Floor and Sexual Health Institute in Philly. I did my research before going there (many years worth of research, because my regular Gyn was no help). They are a pretty prominent specialized place on the east coast for vulvodynia, urological, complicated pelvic floor issues, etc. I've been going there over a year for vulvodynia treatment, and it's reduced my pain by over 50%, and gotten me to the point where I can have pain-free sex (and this was after having major vulvar pain for 13 years)Dr. Whitmore is the med director, and prominent urologist, who I am now seeing for my urological needs, as well. So they all work there as a team - all my records in one place, if you can believe that!

Another thing that I like about this place is that they stress healthy, holistic living and recovery (meditation, PT, accupunture, massage, nutrition, etc.).

So anyway, I just hope that my prolapses don't get worse!!! I can live with them how they are now.....I don't have any real discomfort other than knowing they're there, and some difficulty voiding (which seems related more to the tumor pressing on everything). I guess I will really see what happens after I have the tumor removed.

I am trying to do the posture - it's becoming more natural, and I'm getting my mom to do it, too.

Christine

June 30, 2007 - 11:02am

Medical science has both the technology and knowledge to offer women very elegant operations such as needle aspiration of ovarian cysts through a vaginal approach. That gynecology is not progressing in these ways speaks volumes about what is truly motivating the system.

I feel the comment “Surgeons are good at saying whether a procedure is life-threatening or simply a choice” requires elaboration. How many women have come to this board with horror stories of how they were frightened out of their wits by comments from their surgeons, such as “If you don’t do this now everything is going to fall out.” At least as often women are offered the opposite end of the spectrum, “Do nothing.” The culture of reconstructive pelvic surgery is unquestionably biased in its approach to treatment of problems of organ support.

The culture is changing, however, but still so very confused. Now we are hearing things like “Nothing you can do is going to make it worse.” Whose side are these people on fcol?

As far as running in the other direction if other procedures are offered, understand that urogynecology cannot “make a good case” for operations that are conceptually faulty at their most fundamental level.

All of this business about “choice” is nothing more than a fabrication. Women cannot make an informed choice because they do not know enough to do so. Doctors cannot provide them that information because it does not exist.

paige

June 30, 2007 - 11:26am

hi nicole,
can you change your contact info to where I can get your email address? or just send me an email
i have some links that might be of help to you.
thanks,
paige

Christine

June 30, 2007 - 11:29am

please share the links with the rest of us...this is an open forum.

Clonmacnoise

June 30, 2007 - 3:35pm

For as many years as I can remember, I've been "accused" of many illnesses. There have been a glut of terrors and tortures suggested over the years. Sometimes they have been life threatening only to find out none of these were positive diagnoses. I am guessing a lot of doctors like to play God with a small (very small) g.

My son works in cancer research and therapy and is convinced a lot of doctors submit patients to unnecessary and painful stuff to pay staff and to get new equipment. Doctors make money by "doing" something. As for me and my house - I'd rather not, thank you!

Personally, I stay as far away from doctors as possible with the refrain ready on my lips - NO! Unless it's critical, do we really need some detached body mechanic telling us to breathe in and out? Can't we figure things out for ourselves? Does everything require our obedient expensive visits and a DR.S OK?

I've recently gotten Christine's DVD and for someone my age - 56 - who works 12 hour grueling days, exercises and eats right, it makes real sense to me. Living well - ie eating right, moving gracefully in the world, sleeping enough, getting real down time, and laughing are great treatments we too often refuse to embrace.

Thanks Christine for your work.

Clonmacnoise

caterpillar7

June 30, 2007 - 9:41pm

Thank you all for your feedback, and I respect everyone's opinion as to whether or not to have surgery or medical procedures. For me personally, these difficult decisions I'm making are definitely based on whether the situation is life threatening, and also whether the procedure or surgery would potentially improve my quality of life.

Right now, the decision I'm making to have surgery for the tumor removal, and exploratory bladder procedure is mainly because it's causing me pain and pressure, constipation and bladder issues. Is it life threatening? Probably not....although it has the potential to twist my ovary and cut off all blood supply, therefore I would lose at least my ovary. I'm only 28, I want to keep both my ovaries if possible, my main goal is to preserve my fertility.

I really look at all procedures and potential surgeries and weigh the pros and cons. If it's something that's not necessary, not causing a lot of pain, and does not have the potential to cause further damage, that I'd probably opt not to have a procedure. But if it would improve my quality of life versus being in pain, being scared to do normal activities, I would really consider it. My main goal is to be able to have children, and live as painfree as possible, be able to exercise and have sex. Right now I cannot do those things.

I know that there are a lot of doctors who just jump either way - to or away from surgery, without doing the appropriate tests, or exploring all options. Believe me, I have been subject to lackadaisical doctors for years dealing with my vulvodynia. But there are doctors who do reside in that middle area, who do explore all options, and help you make the best ones. Honestly, after all I've dealt with in having vulvodynia I would have surgery if it were an option, and I had a good chance of improving. The pain won't kill me, but it has been psychologically damaging, and reduced my quality of life.

So, anyway, that is just basically how I'm approaching this situation with the tumor, prolapses, and possible IC. Trying to get all my information straight and figure out all my options. Get copies of my charts, ultrasounds, and MRI's. Analyze them and get real answers. Get second, third, fourth opinions. Know my body, and trust that I will do the best thing for it and my peace of mind.

granolamom

June 30, 2007 - 10:01pm

I'd probably have that nasty cyst removed too. ovaries are good to keep around and dermoid cysts spook me.
the exploratory bladder thing, well I don't know anything about that procedure, louise gave you some good advice. my biggest concern would be what the healing process would look like. especially since you already have issues with pain in the area I'd be hesitant to introduce any more painful stimuli than absolutely necessary. it would be great if you knew some other women who've been through it, just so you'd know what to expect.

and a question re: PT, you said it wasn't helpful last time, far away and expensive. so why go? if they recommend it again, try it for a short time, but don't waste your time, energy and money on something that's not helpful.

I hope the surgery goes well, you heal quickly and easily and find your pain gone afterwards. and please do keep us posted.

louiseds

June 30, 2007 - 10:09pm

Hi Nicole

It's great to hear that you have done so much research. It sounds like you have a sound approach to it all. Good luck for the surgery.

Cheers

Louise

Therese

July 1, 2007 - 7:23am

My sister just had her last ovary removed because of large cysts that had twisted the ovary so badly making it infected and dead basically.
We are still waiting to find out about large lump she has on her way upper thigh...the drs. are doing another biopsy before they try and remove it. Her surgeon thinks it is possible that it is endometriosis-sp! that has gone to her leg?!

I wish for you a really great outcome for the ovary. My sister never even had any pain or other symptoms with it so she had to have emergency surgery when it finally basically exploded.
I have a hard time since the other was removed for the same reason--I mean how did they not know? They were only checking with internal ultrasounds every couple of years or so...? Why is this such a mystery to them?

I hope the very best Nicole!

granolamom

July 1, 2007 - 11:20am

I know a few women who've had ovarian cysts removed. they go for u/s follow ups every few months, and were told that sometimes a cyst can grow so quickly that it isn't always found before causing problems.
I haven't done any reading up on it so I don't know if that's absolutely true or not, just what I've heard.

I didn't know endometriosis could end up in your thigh. that's pretty scary/amazing. sending good thoughts and prayers your sister's way.

Therese

July 1, 2007 - 10:48pm

I thought it was strange about the endo--but it seems endo is a pretty tough nut to crack and who knows...it is all very slow getting them to diagnose...my other sister worked for years at the U of MN Cancer Clinic so the best Drs there are looking at it all...the outside area is not cancerous but they are being cautious since they DO NOT know what it is --could be melanoma...they are doing a deeper biopsy Thurs and these are experienced Drs and they are being careful not to do surgery without knowing what it is! Thank G*d. I never knew this but often the outside will be cancer free and the tumor closest to the body can be cancerous and they do the surgery and literally kill the person--cancer spreads all over...

I told my sis that there was nothing she could have done to prevent the ovary issue...obviously they do not have the tests yet to really help in that area...maybe it is the whole thing of not valuing our parts--acting like unless you aren't planning to get pregnant again who cares what parts you have... They say it often enough to you...or intimate it...

Thanks alot granolamom though. I can't help but feel crappy it is my little sister you know?

granolamom

July 2, 2007 - 10:40am

yep,I know all about little sisters, mine's been recently diagnosed with otosclerosis and has significant hearing loss in both ears.
I just want to make it all better for her.
of course we can't fix everything, can only pray, stay positive and strong for them.

(((therese)))

51anddiscovering

January 15, 2011 - 8:25am

Sounds like you have alot going on like me..the rectocele, cystocele and now IC, I beleive ,was aggraveted by wearing a tampon to keep the rectocele in place.
I can live with the rectocele and cystocele things and hopefully wear a pessary but this IC thing is a syndrome and has me scared to death...will I never be able to eat acidic foods again?
You can contact me on here through email, although I did not see your email on here...good luck to you