Bethany's story about dealing with a pelvic organ prolapse

PELVIC ORGAN PROLAPSE and one brave woman’s journey through the ordeal.

There is not enough information for women about pelvic organ prolapse given in hospitals, at doctors surgeries or in the general mainstream sex education system. Pelvic Organ Prolapse isn’t life threatening but is horrific for all those who endure it. It literally puts their life on hold. Read Bethany’s story which is one of many. The reason I am running these case studies it to show the world, there is nothing to be ashamed about when one organ falls into another but it does need urgent attention if you find yourself in this position. More help is also needed to help women like Bethany for the emotional and psychological support. There is nothing available for these women. There is more help for drug addicts, child abusers, sex offenders and alcoholics than there is for NORMAL women who through no fault of their own suffer pelvic organ prolapse in silence. Ladies it’s time to stand up and take control!

Bethany’s story

Name: Bethany
Age : 24
Location in the world : United States
My condition : Cystocele

Gaynor: Good morning Bethany, thank you for taking part in the case study. When did you realise something was not right with your pelvic floor?

Bethany: During my 3rd pregnancy at 10 weeks gestation I noticed something right at my vaginal opening.  I miscarried at 14 weeks, but the prolapse stayed.

Gaynor: I am so sorry to hear about your miscarriage. Prolapse is traumatic enough but to have the stress of losing the baby must have been devastating. My heart has sunk just hearing this. May I ask what your initial reaction was?

Bethany: I was freaked out.  I was worried that something was wrong with me and had never heard of anything just falling into the vagina like that.

Gaynor: Did you tell anyone about it?

Bethany: My husband, my midwife, an OB, another midwife.

Gaynor: Most men have no idea what a pelvic organ prolapse is let alone looks like, how did your husband react?

Bethany:  My husband was just like ‘that’s weird.’  It really hasn’t affected him.

Gaynor: You are lucky that he took a ‘relaxed’ view to it. I’m glad he is supporting you.
What did the initial consultation of your doctor suggest?

Bethany: The initial consultation with the OB was to diagnose the prolapse and bleeding I had been having (this was 3 days prior to the miscarriage).  He told me I had a mild/moderate uterine prolapse and could look into a pessary if I wanted, and when I was done having kids, if the prolapse worsened or bothered me, I could have a hysterectomy.  He was very matter-of-fact about his diagnosis and wasn’t very personable and didn’t suggest any other options or any other way of dealing with it.

Gaynor: Pelvic organ prolapse is such a common occurrence in women (yet kept such a secret) that doctors are seeing POP patients every day; I guess they become unattached to the feelings of the patient and ‘get on with the job in hand’ so to speak.
Were you offered any counselling or physiotherapy treatment?

Bethany: I was not offered any type of treatment by the doctor.  He mentioned that I could look into a pessary if my prolapse worsened.  At that time it had only been a few weeks since the prolapse appeared, and I was pregnant, so I did not think at that time that I needed any support or treatment.  The doctor mentioned at one point that the prolapse, since it appeared during a pregnancy, could go away after the pregnancy.

Gaynor: So no immediate intervention of support was considered?

Bethany No, I do not have a pessary at this time; I will have one in a couple of weeks, and it will be fitted by a nurse-midwife that is in a different practice than the one I originally went to.

Gaynor: As the prolapse is still present you clearly need some sort of internal support, did you know there are many types of pessaries to treat different types of prolapse. Pessaries also come in different sizes, so be sure that you are measured for the correct size. Having a pessary fitted will help with support but remember that the pelvic floor also needs exercise, women with prolapses should always be aware that going to the gym or doing exercises suitable for ‘non prolapsed’ pelvic floor may not be suitable for their condition. If you have a prolapse please tell your instructor. My advice would be to have a proper course of physiotherapy treatment with a trained women’s health physiotherapist who can train you with good techniques to strengthen the pelvic floor and also something which POP women forget, correct breathing! Yes, if you have POP even your breathing technique needs addressing. You have a lot to consider but with the right treatment, there’s no reason why you can’t have a ‘normal’ life again.

Gaynor: Has this affected ‘intimate’ relations with your husband?

Bethany: It has affected relations in the since that I’m often paranoid that my husband will notice something different, that it will ‘off’ to him.  So far he hasn’t noticed anything but it makes me very cautious about having lights on.  Sometimes intercourse hurts, though with practice we’ve figured out how to make it not hurt but it limits the types of positions you can do.  The prolapse has affected intimate relations more than I really thought about until now.  The emotional component has led to me not wanting to be intimate as much because I feel embarrassed and frustrated that I can’t do the same things I used to without pain.  This in turn affects my husband.

Gaynor: If you could describe in 3 words your emotional feelings during your time of knowing you had a prolapse what would they be?

Bethany: Frustrated! Upset! Angry!

Gaynor:If you could describe in 3 words your emotional feelings now knowing there is treatment for you what would they be?

Bethany: Relief, Happiness, Frustration.

Gaynor: Do you have any advice for women in your situation?

Bethany: Find a provider who knows that surgery isn’t the only ‘fix-it’ option.  Prolapse is common, and it doesn’t mean your body is broken.  Find an exercise program that is tailored to strengthening your pelvic floor, look at support options (such as pessaries) as that might actually help the exercises to work better.  Know that you’re not alone; many women have prolapse of some sort but because of the way our society is we don’t talk about it.  It’s not something to be ashamed of, and in many cases it CAN be reversed.  

Gaynor: What did you know about pelvic organ prolapse before you had it and did your own research on it?

Bethany? I did not know anything about pelvic organ prolapse.  I had never heard the terms associated with it before (cystocele, rectocele, uterine prolapse, etc).

Gaynor: Do you know if your mother had a pelvic organ prolapse?

Bethany: I never had a reason to ask my mom about this until I experienced it.  My mom does not have an organ prolapse, though after her last baby she had an emergency hysterectomy.  She had no issues prior to the hysterectomy.

Gaynor: What kind of issues does she have now?
She went into menopause early-she was 35 at the age of her hysterectomy and since they took her ovaries (a very important part of hormonal balance for women) she ended up going into menopause and experiencing all that went along with that such as the hot flashes/mood swings/etc).  She has no prolapse issues despite having some risk factors (overweight, multiple pregnancies, caesareans and vaginal births).

Gaynor: Although experiencing a dreadful trauma at such a young age, she is lucky she hasn’t experienced any kind of pelvic organ prolapse and may she be prolapse free for the rest of her life.

Gaynor:There are many ‘gadgets’ being sold on the internet all with ‘claims’ that can help solve pelvic organ prolapse yet very few actually have any medical evidence that supports their claims. Out of desperation would you have blindly bought one of these gadgets in the hope it would solve the problem?

Bethany: I’m generally skeptical of programs and gadgets that claim they can fix things.  I checked out a couple of books from the library written by people who had claims about what worked to fix prolapse and in the end I did pay for a DVD that has phases of exercises intended to strengthen the pelvic floor and core muscles.  I did check with a few midwives that I know to get their opinion on the program and they all felt that the exercises were what I needed to be doing, so I feel it was a good investment.  Otherwise, I was getting to the point where I might have started blindly wasting money on such things because I wanted to fix this.

Gaynor: I’m glad that you had the sense to speak to medical professionals who understand prolapse issues first, this is good advice for anyone out there who is in the same situation as you.
Gaynor: Different countries have different medical processes when dealing with pelvic organ prolapse. For the women in your country, can you explain from start to finish what is involved and what costs you personally have to pay out for your treatment (if any).

Bethany: Since the issue of POP isn’t talked about, I really don’t know what the common treatment is.  I get the impression that a lot of women are told surgery is the only option and thus end up with a hysterectomy and/or repair jobs that lead to a host of other problems (incontinence, infections, troubles having sex, etc).  The cost of these will vary depending on if a woman has insurance and what type.  A woman paying out-of-pocket costs for a hysterectomy will pay about $10,000 total.  If a woman is low-income and on state insurance, she won’t have any cost associated with such treatments if it is deemed a medically necessary treatment and from what I’ve seen of physicians, they generally view prolapse as something that needs surgery.  Most insurance companies will pay for hysterectomies-the requirement is usually that it is medically necessary.  I don’t have any specific information on repairs-I would anticipate that cost to be much less than a full hysterectomy.

Gaynor: Wow! I guess we are spoiled with our NHS system in the UK as operations and treatment is free.

Bethany:I have to wonder if insurance and NHS systems aren’t actually promoting the use of operations instead of other treatments.  If doctors will be paid for surgery, which is quicker and more time effective than setting up a good exercise program and fitting a pessary for women, why not do the surgery?  I’m not suggesting at all that insurance shouldn’t cover surgeries, but maybe if doctors had more motivation to take the time to properly diagnose and treat POP more women would find things other than surgery to help them.

Gaynor: I don’t think that the NHS opts for surgery over alternatives, as surgery is far more expensive than the alternatives and the NHS are cutting back on costs where ever they can. I know several women who are given pessaries as an alternative. Sometimes pessaries aren’t enough, they need physiotherapy training also. In the UK it depends very much on where you live as to the treatment you receive, I would like to see equal opportunities for everyone. Maybe it will change! After all every single woman on this planet deserves a quality of life where they can get on with a pain free normal life.

Gaynor: Bethany your story isn’t uncommon, and even though you felt you may have been the only person this has ever happened to, there are millions of women all over the world going through this trauma. What can the medical profession in your opinion as a pelvic organ prolapse sufferer do to raise awareness and help women help themselves?

Bethany: I think the first thing they need to do is include information during prenatal and well-woman care about prolapse and how to strengthen your pelvic floor…and not with kegels, as kegels alone are basically useless.  I think postpartum care should offer information about prolapse and strengthening exercises.  I also think nutritional and hormonal components should be mentioned.  When women DO come in with a prolapse, the medical staff needs to understand that this type of issue causes a great variety of emotions in a woman and should be willing to understand what she’s going through.  Practitioners should also learn more about prolapse and the options available.  It shocked me to hear from most medical staff that they felt surgery was the only option.  I walked in at 23 years old and they said that I could deal with the prolapse until it worsened to a point that I needed surgery or until I was done having kids, at which point I could have a surgery.  When I asked if there was anything to reverse it, I was told no.  I was told a pessary could help with the discomfort, but that nothing could change it.  When I specifically asked about exercises, they had never of that either.  There is such a lack of knowledge that needs to be addressed within the medical community.  If prolapse is treated as a broken body part that needs removed or sewn up, things will continue the way they are and women will go through POP and surgeries without every knowing there were other options.

Gaynor: You have brought up such valid points of awareness here.
Do you think pelvic organ prolapse issues should be taught in schools as part of the sex education program?

Bethany: That’s an interesting concept.  I think it would be a good idea to teach girls about the importance of a strong pelvic floor and the foundations of how it stays strong and the effects life can have on the pelvic floor.  It would need to be done in such a way that we aren’t scaring girls away from becoming pregnant because they fear they will develop prolapse, but if a program could really focus on prevention and steps to take to greatly reduce the risk of getting a weak pelvic floor it would be a good addition to sex education.  Very unique idea, I like it.

Gaynor: Your comments have encouraged me to approach schools and the minister of education to put this as part of the curriculum. Who knows, in the future we could have a whole team of POP ladies speaking to teenagers from personal experience.
Gaynor: Did your doctor explain what a cystocele was and how did he explain (with diagrams, pelvic model, just verbally?)

Bethany: The doctor I originally saw did NOT explain what a cystocele was at all.  He just diagnosed a uterine prolapse and basically said that my pelvic floor had weakened and my uterus was coming down.  I think he misdiagnosed because my cervix was coming down, but my midwife who diagnosed me properly actually checked the state of my pelvic floor which is when I learned that it was a cystocele, NOT a uterine prolapse, and that the area around my uterus was actually quite strong.  The cervix was coming down due to pressure from the cystocele, NOT a prolapsed uterus.  The midwife showed me diagrams and gave me a good visual, as well as verbal explanation.

Gaynor: What you have just said is SO important and points out the absolute necessity of obtaining complete accurate information.
What did your doctor explain he would do during the surgery ie did he explain what would happen in surgery?

Bethany: The doctor just said a hysterectomy would be done when A. the prolapse worsened or B. I got tired of dealing with it.  I already knew what a hysterectomy was so I didn’t question him further, though he really should have explained why he thought it would help.

Gaynor: Another valid point for anyone reading this. Never be afraid to ask questions to your doctor, no matter what the question is, if you don’t know the answer then it’s a valid question.
Did you question him why you would need a hysterectomy if you were being treated for a cystocele?

Bethany: I didn’t go back to the doctor after his original diagnosis, so I have not asked him about why he would suggest a hysterectomy for a cystocele.  I don’t plan on going back to him but I may in the future go back just to educate him on what can be done to help with a prolapse, and certainly to thank him (sarcastically of course) for the months of emotional stress I felt believing that my uterus was failing, and that my body had failed me.  I would love to direct him to your site as you start uploading more case studies.  It really concerns me that this doctor who was known as the prolapse specialist in his office couldn’t even diagnose me correctly and didn’t do a thorough exam of my pelvic floor and uterus.  It concerns me in general that the first response is to cut out a female organ that plays a very important role in the female body and that he didn’t even know there were alternative, proven methods out there.  How many women are having surgeries because this doctor was taught to diagnose prolapse as uterine prolapse regardless of what is actually going on?

Gaynor: I can understand why you would feel angry and let down, but I have to ask, are you certain that the midwife is right?

Bethany: I am sure she is right.   The reason I went to her for a second opinion was because I noticed something else showing up ‘down there’ that shouldn’t be, above the vaginal opening.  From reading up on it I felt that I either had a bladder prolapse and/or a vaginal vault prolapse as I was also experiencing some stress incontinence and I would often have to urinate minutes after I had already gone, and sometimes I felt like I couldn’t empty out completely, and there was a bulge above the vaginal opening, and sometimes I could actually see the opening where pee was coming out (definitely NOT normal)—all of these are symptoms of a cystocele.

Gaynor: Can you take me through how both of them the Dr and the midwife examined you and how then they came to the diagnosis.

Bethany: The doctor had me in stirrups on the table and just did a quick 1 minute internal exam where he reached in and told me to bear down like I was having a bowel movement.  He judged how far my cervix moved and determined based on that I had a uterine prolapse, a 2 on a scale of 1 (very mild) to 4(very bad).
The midwife had me on a bed with my knees opened so they were almost flat on the bed, and she used a speculum.  She went in slowly and literally had to stop because the speculum hit something (my vaginal wall).  She then used her hand and went in slowly and palpated my uterus (to make sure there was nothing left inside from the miscarriage), and she felt around the uterus and said that it was firmly in place and the muscles around it felt strong (she also mentioned I had a tipped uterus, which the OB had never mentioned or even felt for).  She noted that the muscles around my bladder were very weak and that my bladder had slipped out of place.  She said the muscles around the cervix itself were strong, but the pressure from the bladder slipping when I was standing would cause the cervix to move down.  After examining me she showed me a detailed diagram of what a normal pelvic floor/organs look like, then showed me what a uterine prolapse and what a bladder prolapse looks like, and the bladder prolapse looked exactly like what I have going on down there, and it also showed how the cervix could be coming down with the stress of the bladder.
Her exam took 4-5 minutes and was very thorough and didn’t involve such directions as ‘bearing down’ as with her approach she felt the actual muscles to diagnose their condition instead of just how far my cervix went down when I strained.

Gaynor: Thank you so much for sharing your experience and being so open. Please stay in touch. I hope you find a solution for this and you can finally get back to a normal life.

For more information about pelvic organ prolapse go to www.incostress.com there are free downloads at the bottom of the website. No personal information is required for you to download the information.

Click the prolapse diary (opens into a PDF) print and monitor your symptoms so you can show your doctor.

Prolapse Diary

Disclaimer: The interview is the interviewees own words and experience. It is not meant to represent any medical claims or advice of what action women with pelvic organ prolapse should take. All women with pelvic organ prolapse may have similar symptoms but the treatment may not necessarily be the same for everyone. We strongly advise that you always see your doctor and don’t be afraid to ask questions you are not sure of. We are not medical advisors nor profess to be. We simply want to raise the importance of not being ashamed if you have pelvic organ prolapse and that you do seek proper medical treatment. Never try to self diagnose as you may have an different underlying medical complaint causing your symptoms, leave the diagnosing to a professionally qualified person dealing with pelvic organ prolapse.