CIS/Hysterectomy

• By JanerG3
• Posted May 15, 2007 at 8:43 pm
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Thank you for your opinion on the hysterectomy. It is very true that all women should ask those important questions that you discussed. As a GYN nurse , those questions seem like a no brainer to me to ask prior to surgery but as a patient , I guess people without a medical background would not know what to ask. I want to also add to your story and let women know that everyone does'nt go through what you did. I am 38 years old and had invasive cervical cancer last year that required a colpo, leep and radical hysterectomy. In my opinion, a woman with cancer or with CIN III , that are finished with child bearing, should have a hysterectomy. I dont think you should keep waiting until it is invasive and then have to have a radical. If there is anyone out there that does not know the difference, I will tell you. A hysterectomy removes the uterus and cervix, possibly the ovaries and tubes. A radical is all that plus lymph nodes and 2 inches of the vagina. All my 'sex' organs still work like they did before. The surgery did not stop my body from responding to stimulation. Yes it is true that you can develop other problems like a cystocele or rectocele but that can happen anyway with age. I see it daily. I use Vivelle dot patch twice wkly and feel great. I feel like God allowed me to go through this so I can share my story. There are risk with all surgeries, no doubt about that but there are no side effects as horrible as death. I can live without 'sex organs', I can live with hot flashes, I can live knowing that someday other problems may happen that requires more surgery. The main thing that I want to get across is " I CAN LIVE" THANK YOU GOD!!!! Dont take a chance at living. Do get 2nd opinions if you dont feel good about your doctor. We (at my GYN office) even recommend that if we feel like a patient is unsure. We discuss the pros and cons of surgery and refer to GYN/Oncologist if the cancer is advanced or invasive. I saw a great GYN/Oncologist 2 hours away. He did an awsome job with the assistance of a DaVinchi Robot. If you live in or around Atlanta Ga and need a GYN/Oncologist, email me and I will give his name.
Jane

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• By Faith2
• Posted May 17, 2007 at 10:25 am
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Dear Jane,

I wish it was as simple as a "no-brainer" to ask those questions prior to surgery. I think you said it best when you said, "It is very true that all women should ask those important questions that you discussed." While you made it clear that as a gyn nurse, the questions are obvious, please keep in mind that not everyone is a gyn nurse. Also, please keep in mind, that even if you are a medical professional, when it's happening to YOU, it can be very different than taking care of a patient. A friend of mine runs the lung cancer screening clinic in Toronto, and you'd be surprised the number of doctors who are diagnosed with cancer or pre-cancer and she will have to write down on paper the steps they need to take for follow-up because they are stunned. Being a nurse, you know that when a patient is hit with a diagnosis like cancer or pre-cancer, anxiety kicks in and can alter the thought process. That is one of the reasons, in nursing school, you are taught to be a patient advocate and when caring for patients, you develop nursing plans to address anxiety, etc. , kept in the patients' charts. In fact, Nora Coffey, the founder of HERS, not a doctor or lawyer, will tell you of the countless doctors' wives and nurses she has counseled, all uninformed of the effects of hysterectomy and all felt betrayed by their own profession or doubly betrayed by their doctor husbands. So, being a medical professional does not make you immune to being uninformed or mistakes.

Does this happen to everyone undergoing a hysterectomy? Absolutely not! But is it happening enough and has it happened enough that a woman has dedicated her life to changing things so that this doesn't happen to 1 more woman? You bet! If you were that 1 woman, you would want her as your advocate before making such a serious and irreversible decision.

The context of my blog is my personal experience, an early pre-cancer/cancer, which is the first thing I say. I can assure you that I am now part of a much larger group of women who, having asked many, many questions and got a 2nd opinion, was not informed of the consequences of a hysterectomy. As a nurse, you also know that the uterus is not just for child bearing. It provides anatomical structure to other organs such as the bladder, rectum and intestines. As a sexual organ, It contracts with orgasm enhancing the orgasm (a woman can still experience a clitoral orgasm, but no longer a uterine contraction, because the uterus is removed in a hysterectomy - as I said in my blog, if you are aware of uterine contractions when orgasming, the orgasm will not be the same with that organ gone). It is also part of the finely honed endocrine or hormonal system. Further, if an oorphorectomy is done, instant surgical menopause occurs. Even if the ovaries are kept, 50% of women experience early menopause due to diminished blood supply to the ovaries when the uterus is dissected away. I am glad to hear that you have addressed your hormonal needs. I also take hormones. But, what about the woman who can't (i.e. breast cancer issues)? Does she realize that when she signs her consent form, if she's just having a total hysterectomy where the uterus and cervix is removed, that she may also be signing for a possible oophorectomy and a hormonal imbalance as a result of it?

I think we agree that women need to be informed of all of their options so that they can make the OPTIMAL decision for themselves. That is my point. Because so many women haven't been told, I am willing to tell MY story and provide information for a resource that they can make the decision to either contact or not for more information. I wouldn't dream of trying to make a choice for another person. Likewise, I wouldn't dream of not providing a person with all of their options or risks and benefits of all of those options. I am truly sorry to hear of your struggle with invasive cancer. You know first hand your experience with it. I am glad that you knew all information up front and made the best decision for you based on that. Your story is just as important as mine and for women who need a hysterectomy for life saving reasons, it is hopeful to know that life does go on. I also treasure life as a gift from God and I treasure the quality of life. I think that it is vital that a person is informed in order to make the best decision that will affect her life and not take those God given gifts away without her knowledge of short term and long term effects.

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• By JanerG3
• Posted May 18, 2007 at 7:31 pm
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Dear Faith2,
I have to respond in saying that I am disappointed that there are doctors out there that dont tell their patients the risks and benefits of any and all surgeries. I hope anyone who reads our blogs realize that a good doctor is very important. Dont just go to anyone in the phone book. Ask friends, neighbors and community website like this one for doctors names that are known to be honest and great surgeons. If you find one, all the scary things we have discussed here will be addressed. Something I really like is for my patients to do is bring a list of questions with them to their visits. Most people probably do get overwhelmed when told bad news and will forget to ask certain things, so I always suggest to them to go home discuss the diagnosis with their family and make a list of questions to ask when they come back in. We dont want anyone to make a split second decision on something as serious as surgery. I only responded to your blog to let other women know that there are people out there that do great after surgery.As a nurse , I get really frustrated with patients that come in our office with a bad or negative attitude about surgery, because of what happened to someone else. Yes bad things happen, Yes good things happen, Yes as a human , you have the right to know and should know what will or possibly will result from surgery. I just dont want anyone to get too wrapped up in searching the internet or wanting to know every little horrible detail of a surgery gone wrong and forget that it could be a life or death decision, if not now , in the future.For me , surgery was the only answer. No amount of risks would have changed my mind. I do think that everyone should know what can happen. Not knowing and then it happening like in your case would be very upsetting. Every story is important to tell, after all , that is why we are here. Word of advice to all women, check out your doctor. Make sure he takes the time to explain things to you. If anyone lives in the Atlanta area and needs a great OB/GYN Oncologist, Dr Matthew Burrell at Northside is awesome. If you have a doctor and nurse (lol) that you feel comfortable talking to and trust, you will be fine.
God Bless Everyone on this website,
Jane

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• By Faith2
• Posted May 19, 2007 at 12:00 pm
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Dear Jane,

Unfortunately, the doctors I saw are gyencologist-oncologists that are respected, one being the director of gynecology-oncology at (2) hospitals. Both are reputable. I don't know why things were not explained to me. I asked many questions, had them written down, my husband was with me at my regular visits and also at my 2nd opinion.

I have talked to many women who have had similar experiences in the sense that they were not told of the after-effects of hysterectomy. The founder of the Hysterectomy Association in England is another example of a woman who was not told about these effects. She started this association to help other women become informed before making that choice. She is actually part of a referral system in England - because her association is impartial and gives information. She does not persuade a person one way or the other, knowing that it is a personal decision based on each person's circumstance. But, she does make sure a woman is informed. That way, the best choice can be made for that woman. The founder, Linda Parkinson Hardman, wrote a book called, "Losing the Woman Within." On page 43, she talks about why she started this assocation, the lack of information that is still happening today to many women, and she states that it appears that this is a "worlwide phenomenon, not just limited to NHS and the UK." Log onto: www.hysterectomy-association.org.uk


The HERS Foundation, started by Nora Coffey, another woman who had an uninformed hysterectomy, is a US resource that is currently campaigning, "Say No 'Til You Know" and has produced a video, about 10 minutes long, for a doctor to give to a patient before having a hysterectomy so that she is informed. That website is: www.hersfoundation.com and you can log on to sign the petition for the campaign.

Again, not everyone has this experience and, thankfully, you did not. If you are one of the many women who has, it is devastating.

I read something interesting on the Cancer Compass website. A standardized booklet is being produced and distributed to hospitals/cancer centers to advise people diagnosed with cancer of their options and effects. What a wonderful idea! Perhaps a similar booklet could be produced and made available at all gyn offices that pertains to hysterectomy. Included in it could be additional information that addresses post-op care 1 week out, 2 weeks out, etc. I'm sure that many doctors do this (I bet their nurses are instrumental here)- it sounds like you've had a good experience and even recommended that doctor. Obviously, the surgery/treatments would still be customized to each person, but the information, benefits and risks, for the procedure and treatments would be available - across the board.


A standardized method of distributing impartial information to every woman who may be considering a hysterectomy, so that she can make the best choice for herself - - may be a solution to a real problem.

I remember when I was pregnant taking Lamaze classes as delivery time neared. Having information to prepare me for that experience helped. It did not define my labor experience, nothing can do that until you experience it. But I wasn't in the dark without knowledge, either. I can remember telling well-meaning family and friends no more labor horror stories. To counter my fears, I would review my notes and info from the classes I took. I think people mean well when they describe each detail that occurred to them. Yet, I also think people need to communicate their experiences by talking/writing to help accept and heal. I do not want to scare anyone or bash doctors because of my experience. But I am shocked at how many women were not informed by the very people they trust the most, now, including me. And I'm talking about educated women who do ask questions. I am all for a solution.

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• By Faith2
• Posted May 19, 2007 at 2:13 pm
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The Cancer Compass website has posted an article, "Information is Powerful Weapon in the Fight Against Cancer" 5/16/07.

"Patient Resource: A Cancer Treatment and Facilities Guide for Patients and their Families" is available to buy on the website www.patientresource.net. I think it sells for $6.95. It's free to oncologists/cancer advocate groups. Check with your doctor to see if it's available in her/his office.

Mine's on its way, having not read it yet, I don't know if it addresses hysterectomy. But the publishing of such a booklet addresses the need for being informed!

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• By flowershoplady
• Posted May 19, 2007 at 9:43 pm
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I agree, jane, that for many women a hysterectomy is very appropriate and the right medical choice to make.
i took a look at the hersfoundation website and it seems to be totally against hysterectomies; yes, the premise is for informed consent, but reading through the website i get the impression that the organization really doesn't support this surgery at all.
i think that most women are informed about risks, and it's also up to the individual to take ownership of her health and ask questions and become informed.
faith2, i'm not sure what you felt uninformed about; i'm sorry if i've missed that in your postings.
there are indeed exceptions and problems that can occur in some instances. in most cases, though, things go as expected. yes, there are consequences of hysterectomies, and they're not always easy to deal with. but, unfortunately, many of us need to have surgeries to remain - or become - healthy. one needs to have a doctor whom you can trust. i'm another woman, like you, jane, who has doctors i really like and trust.
having websites like this are great - but yes, one also learns about the problems encountered. after all, the women who are 'fine' are probably less likely to need/want support.

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• By Faith2
• Posted May 20, 2007 at 1:15 pm
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Dear Flowershoplady,

My initial blog spoke to the issue that having been diagnosed with CIS (carcinoma in situ) of the cervix, and having been counseled by (2) reputable gyn-oncologists, that the hysterectomy I had based on that counsel was not the optimal choice for me because I was not given basic information in order to make an informed consent, nor given all of my options that could treat the early stage that I had.

I went on to explain some of those problems I am encountering. I have included resources that I have contacted since, to help me come to terms with what has happened to me because I thought I was alone in this. I have found out quite the opposite. I can only assure you that I am one of many women this has happened to. Have you spoken to Nora Coffey? Have you talked to other women this has happened to? Have you read, "Misinformed Consent"? Lise Cloutier-Steele has written another article that you can go online and read called, "Women, Lawsuits, Doctors and How the Medical Community Promotes Injustice". Finding out after an irreversible surgery that other options existed and that the damage now caused is worse than the initial problem and could have been avoided is DEVASTATING. Dr. Christiane Northrup also discusses the medical culture surrounding unnecessary hsyterectomies in her latest book. Again, I would not dream of telling a woman that she 'should' or 'shouldn't' have a hysterectomy and I did not do that. I am telling women to be informed so that they can make the best choice for them. To assume that a person, especially when hit with a diagnosis of cancer or precancer, knows what questions to ask is an awfully big assumption. Blaming a person because she didn't ask the 'right questions' is equally damaging. I would question the ethics of a person who would laud that kind of smugness over another, especially in a time of crisis.

I do not expect women who were informed and made a decision to have a hysterectomy to fully understand how devastating not being informed can be. You are actually the success story and the hope story. I am glad to hear that you also had an informed hysterectomy and knew possible side effects and had everything explained to you. Perhaps, you are not experiencing any problems associated with an irreversible surgery. I will go out on a limb here and say that even if you did have problems or anticipate problems, based on Jane's response, that since you were told up front of the effects of hysterectomy you are likely better prepared to deal with any of these effects should they occur because of that knowledge. Again, that is my point. If you have a medical team that does that, this will not be an issue for you. Further, you are assuming that a woman, who has been hit with a diagnosis of cancer or precancer, knows exactly what questions to ask. That again is the reason for my blog. If a woman has logged on because she is in fact finding mode then perhaps it will generate the question, am I informed about a hysterectomy, and hopefully start a dialogue with her doctor so she can avoid what happened to me and many, many women. If she's already informed, chances are she'll skip my blog because it doesn't pertain to her.

Using a blanket approach to tell someone they should have surgery is a dangerous approach.

There was a time when women diagnosed with breast cancer had both breasts removed with a double radical mastectomy. This included routinely taking lymph nodes under the arm that left women terribly disfigured and with swollen arms because the lymph drainage was compromised. Enough women came forward about this blanket approach to breast cancer. Technology has changed (I'm always grateful that we live in today's technological era compared to even 20 years ago). Now, lumpectomies are done where mastectomies used to be the method of treatment, and have been proven as an acceptable, successful way to treat those early breast cancers.

A panel of doctors in Minnesota have published, "Evaluation and Management of Abnormal Pap Smears: A Primer for Primary Care Providers". Page 20 discusses treatment for high grade lesions, CIN 2 and CIN 3/CIS. The website is: www.MNSage.com. Printing this out and taking this to your doctor may be another way to open a dialogue if uncertain which questions to ask. I have also since learned of studies that have been done that compare the efficacy of a laser LEEP cone to a hysterectomy for treating CIS which has been found to be as effective. Does this mean that a woman will not experience dysplasia again? No. Does having a hysterectomy mean that a woman will not have vaginal or vulvar dysplasia? No. That is why Paps are still required. If only it was that simple. Each woman needs to be evaluated and successive treatment based on her history and her choice. Having a medical team that provides you with information, options and compassion will most likely ensure the best outcome. It sounds like both you and Jane had that experience. I would love to see that across the board for all women.

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• By flowershoplady
• Posted May 20, 2007 at 1:43 pm
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faith2, i'm really sorry that your doctors didn't discuss other treatment options for you. and, i hope you're not saying i'm being smug or assuming. i do know how difficult it can be to figure out what's right for one own's health. we are not experts and rely upon those who are. i had my hysterectomy after two leeps, and it was the 'next' way in which to treat recurring dysplasia. and, i'm also a woman for whom the hysterectomy didn't 'work' since my dysplasia has returned. i've also experienced additional surgeries because of the hysterectomy as well as very problematic side effects from surgical menopause. hysterectomy is a very serious surgery, and i agree with you about being fully informed.

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• By Faith2
• Posted May 20, 2007 at 4:36 pm
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Dear Flowershoplady,


I am terribly sorry to hear of your recurrent dysplasia. I hope that a cure is found to stop this virus dead in its tracks (mine was HPV related, I don't know if yours is). I read something a while ago about a topical treatment being used in a study in the UK to treat HIV and that it was being used to treat early HPV lesions with some success. Unfortunately, it was a study, but I'm hopeful that breakthroughs will be forthcoming. Can the vaccine, Guardisil (sp?), be effective against VAIN? I met with one doctor who shrugged when I mentioned that I needed annual Paps - she said that statistically, it's rare, about 1%. Yet, another doctor, a gyn-onc specializing in cervical cancer world-wide, told me how important it is to continue with annual Paps. I've also read blogs from women dealing with VAIN and recurrent dysplasias, such as yourself, who are willing to share their stories. I will err on the side of caution and be vigilent with my Paps. I thank you for sharing your private story. This is something I will need to stay on top of as best I can. It seems to me that the risk of dysplasias and cancer still remains even after LEEPS and hysterectomies are performed. I am really hoping for a cure.

I had only (1) LEEP and then a hysterectomy. In hindsight, for me, and based on the pathology report from my hysterectomy and since confirmed by an independent pathologist, a 2nd diagnostic LEEP could have been done. In fact, my doctor told me not to tell my husband (of 22 years) that I was HPV+. He also told me not to go on the web for info. Thus, the 2nd opinion -- which, to my misfortune, wasn't much better. I think that you and Jane have good attitudes - optimistic and hopeful. While I was devastated by my experience, I do not plan on spending the rest of my life that way or becoming bitter. I think your stories are hopeful that life does go on and to make the best of it. I do hope that you will be ok and I will keep you in my prayers.

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• By JANE8
• Posted August 28, 2008 at 2:31 am
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Hi Faith2. Although i have responded to you once before on another subject, I am quite new to this website. I just read your journal and what other members had to respond. First of all this journal was written a year ago and I really hope that the symptoms you mention have subsided or dissapeared. I have read some of your comments and suggestions and you seem to have a lot of knowledge and I appreciate that very much. In reading some of these stories I've been horrified and relieved at the same time. Just knowing that I had CIS one day then I don't have anything and reading of stories where the its recurrent and having to go through all those emotions again feels overwhelming.

I don't know the full details of what your situation was but in reading I have found that your story is similar to mine in a sense. I was diagnosed with Carcinoma in situ mid July and had a LEEP/Cone Bx done 2 days later. The margins came back clear with no dysplasia. In giving me my results he said something that I just can't get out of my head "I hope the pathologist knew what margins I wanted" i just haven't felt at ease since then off topic, he also said that I have a Second degree Uterine Prolapse and he highly recommends that I have a Hysterectomy and in reading your story now i'm even more doubtful in getting the procedure done but my close friends and family keep telling me that I should have it done... I almost regret sharing what is going on with me evethough I needed the support. With his words still ringing in my head i feel so confused. I'm the type of person that rarely went or goes to the doctor for anything there just wasn't ever enough time for myself, and with this doubt that I have I feel that I'm overreacting by wanting a second opinion. I work with general surgeons and I went to one of them and they highly suggested a second opinion so I can have a second LEEP/Cone BX. I have made an appointment with another gynecologist that my boss suggested but I still feel bad. Do you think that I'm overreacting by wanting a second opinion? Do you think I should go to a Gyn/Oncologist or just the gyn for a second opinion? I saw my PCP today for other reasons and took a copy of my records to keep in my file and he said there was no reason for a second opinion and it just made me feel even more confused and I just feel like not going and keeping my 3 month appt. for another pap. Your feedback would be very helpful. It's been very stressful even though I'm a pretty calm person and have tried to stay "normal" its hard sometimes.

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• By Faith2
• Posted August 28, 2008 at 4:31 pm
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Dear Jane8,

I think a 2nd and possibly a 3rd opinion is always a good idea, especially when it comes to female reproductive organs and removal of them.

If you had clear margins in your pathology report than that is that (& good news) - I'm not sure what your dr is saying when he says "I hope the pathologist knew what margins I wanted" - there is a protocol that is followed by pathologists. I would want an explanation from your dr as to what is meant by his statement. That almost sounds like a scare tactic to me. You can have a 2nd opinion from another pathologist by the way if there's any question about the 1st path report and I would highly recommend that, too. Do you have all of your medical records? You need to have those so you know exactly the size & location of the tissue removed and what the pathology is.

Have you been seen by a female gyn or gyn-onc? The fact that the CIS was removed and you now have clear margins may indeed mean to your PCP that you don't need to see a specialist because the problem is resolved. I'm thinking you need to look for a gyn who you can establish a good repoire with unless you feel you have that with the one you are currently seeing. Many women whose uterus is still intact may have a prolapse and not be aware of it. If it's not causing symptoms, there's no need to fix that. There are non-surgical ways of dealing with prolapse - kegels, other exercises for the pelvic muscles like pilates and core strength training, etc and using a pessary. The best person to see for prolapse is a uro-gynecologist - they have additional training in urology and pelvic floor problems as well as gynecology. I would not let any gynecologist do surgery on me for prolapse as this is such a complicated area I really would want someone who is specially trained in it. There have been problems with mesh and grafts and you need to be seen by someone who's honest about that and knows what they are doing - inexperience or shoddy work can cause all kinds of lifetime problems with bladder and bowel, shortening of the vagina, inability to have sexual relations, etc. I'm not trying to scare you, I just want you to know the importance of being seen by the right person for the job.

Since my last post, I have had surgery. I still have issues I'm dealing with. This whole thing has been extremely difficult for me since I still believe that I had other options than a hysterectomy to treat the level of CIS and dysplasias I had. I met w/the surgeon who did the hyst, told him I was sad that I had a hyst and he went off on me, yelling, etc. I thought my husband was going to lose it back on him. But that meeting, as hard as it was to see him again, was a pivotal point of healing for me. Based on his reaction, total lack of empathy and compassion and immediate defensiveness, I realized that he knew he screwed up. I never had menorrhagia (heavy uterine bleeding & a reason hysts are done) which he had as one of my diagnoses - I made it clear to him that I was being seen by gastroenterologists - didn't matter - I guess he thought I didn't know my own body, even though he put it in his notes that patient suspected gastro-intestinal bleeding. In hindsight, I wish I ran out of his office in the beginning - found someone else. But he had me convinced I had micro-invasion, etc (I did not and a 2nd pathologist confirmed that for me after I realized a mistake may have been made having the hyst). My point is...don't let any dr tell you that you can't have another professional opinion...and be sure to go to someone unrelated to the dr you are currently seeing. As it turns out, my 2nd opinion, even though done in another hospital, turns out to be the director at both hospitals. It was horrible. I cancelled my 3rd opinion thinking I was chasing rainbows, looking for an answer that wasn't there and succombed to the scare tactics being used on me. I regret I didn't follow my gut. You may have limited experience with drs. That does not have to stop you from learning about HPV, CIS, dysplasias or from getting 2nd, 3rd even 4th opinions. This is YOUR body and you will have to live with the consequences of any surgeries - make sure you understand why the surgery is being proposed (is it life or death?), what the side effects and consequences are of the surgery, what other options exist, and DEFINITELY get more than 1 opinion!

Just curious...why would you need a 2nd LEEP if you have clear margins from the first one? Have you been re-examined and another Pap done, or colpo & biopsy that has indicated dysplasia since then?

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• By natures1lady
• Posted August 28, 2008 at 6:54 pm
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hi. i just had a radical hysterectomy for cervical last january. it was radical alright they took all of me then some of my bladder. then they delivered my baby.she is now 19 months old with no problems.but just asthma.im on my way to recovery and i thank god that the cervical cancer is in remission everyday. god bless and i pray for you also.

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• By flowershoplady
• Posted August 28, 2008 at 6:59 pm
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hello, jane. i think a second (or third) opinion is definitely called for. i don't understand why you would need even another leep if the margins were clear. i think that doctor needs to explain why he suspects there's still dysplasia. and, i don't understand why they're suggesting a hysterectomy if everything is fine. a hysterectomy is major surgery with major recovery along with risks. please get a second opinion before having major surgery. and i think it's really important to have a doctor whom you trust. do you have that? if not, time to get a new doctor!

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• By twina246
• Posted February 17, 2009 at 10:24 pm
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faith2, I am struggling with the way people seem to think a hysterectomy is no big deal. I go tomorrow to find out my cone biopsy results. I am prepared to fight to keep my female organs. I do not want a hysterectomy. I feel I am too young to start having issues sexually. I may or may not try to have another baby in the future but I'm not ready to give up my female parts just yet. Why is it that all the women I know whether they have had a hysto or not seem to think it's no big deal? I just don't understand.

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• By Faith2
• Posted February 18, 2009 at 2:53 am
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Hi twina,

I wish I had an answer to your very good question. I think some women really don't understand how interconnected all of their parts actually are. Add to that doctors who are often viewed as authority figures assuring us that we really don't need our parts and will be ok without them, is another guess. Then, there are some women who don't seem to experience any problems or associate problems they may have with the hsyterectomy. Sometimes it takes years for problems to develop and if they are sexual, organ prolapse, bowel or bladder related, can be difficult to talk about or don't know where to turn for help so they just live with it.

Some women on this site who have not had a choice because of their advanced stage of cancer are most likely making the best of their situation. I would imagine their focus is on surviving and to dwell on their loss is counterproductive to maintaining a positive attitude, although I'm sure all kinds of thoughts creep in from time to time when having survived cancer.

Some studies suggest that women who have had horribly painful and debilitating periods d/t fibroids or endometriosis have experienced such relief having their uterus removed and report a better sex life. I suspect their sex life was not all it could be prior to the surgery d/t the symptoms and I don't think it's fair to compare extremely symptomatic women to those who are asymptomatic and had a wonderful sex life - yet that's what's done because there are few if any studies out there for women who had hysterectomies d/t cervical cancer. So often, doctors will rely on those other studies to use as examples. To me, it's like comparing apples with oranges.

There is also a documented mindset in the medical community itself about the paternalistic approach to women's health care - it seems to be changing, but many female ob-gyns do hysterectomies, too. It has become a multi-billion dollar industry, more than 600,000 hysterectomies are performed in the US each year, it is estimated that only 10% of those are actually for life saving reasons. Some women think it's a rite of passage as they age - (it's what you do when you reach a certain age and there's a history with mothers/aunts, etc who have had hysterectomies). Statistically, the south and midwest have the highest rates of hysterectomy and they are performed more on women of minority. The US has the highest rate of hysterectomy anywhere in the world, 2nd to C-section. The trend used to be to take the ovaries as a preventative measure against ovarian cancer. Now, the trend is favoring the retention of the ovaries since the realization that healthy ovaries are better left in place because of their contribution to lifelong hormone production and that the % of ovarian cancer is quite low.

My concern is that women are not victimized twice - once by cancer or early cervical disease and then secondly, like what happened to me, by a doctor who does not inform us of risks, etc, or is up on the latest techniques for options, etc, or who uses cancer scare tactics. The difference between me having a 2nd cone, which was a viable option for my stage of CIS, squamous cell, and the hysterectomy I had, was about $20,000+ - no kidding. I was not informed and it was wrong. Having been trained and worked as an RN, I never thought in a million years that this could happen to me - especially since I value my female parts. But, it did.

My heart aches for some of the women whose stories I read on here who have gone through so much to save their cervix/uterus only to have this dreadful HPV continue to rage in their bodies and cause further abnormalities/invasion leaving them with little or no choice. There has to be a better way to deal with this disease. Many women have taken care of themselves, too - have had regularly scheduled exams, Paps, etc, only to still end up with cervical disease. The stigma that a woman has to overcome only adds insult to injury, and some women have experienced this at the hands of those in the medical community, too. I think we need to bring awareness of this to the forefront and back it up w/$ for research. There seems to be some less invasive techniques on the horizon for early disease, but, in the meantime, many women suffer.

Ultimately, the decision rests with a woman and the best thing she can do for herself is to be informed. Only then can an optimal decision for her health be made.

Sorry for the lenthy response, but I am glad to see that you are tuned in with your body and understand the importance of your female organs and question why this is perceived as no big deal. Try as they might to convince us that we have expendable parts because we're not having babies anymore or put us on hormone therapy, mother nature got it right and we have our female organs, that were meant to last us our lifetime, for a reason. I can't help but wonder how many men would accept removal of their testicles or penis as preventative measures? Has it become more acceptable for women because our organs are internal and can't be seen? One of the biggest concerns about removing a man's prostate is how it affects his sexuality. Unfortunately, some men do have their prostates removed d/t cancer...but how many do it at the recommendation of their doctor as a preventative measure?

I wish you all the best with your cone results and hope that all abnormalites have been eradicated. Be sure to get copies of your records. The bottom line - whether hysterectomized or not - you'll find many women who care on this site and can offer valuable support for various stages of cervical disease. Keeping you in my thoughts & prayers.

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• By flowershoplady
• Posted February 18, 2009 at 9:59 am
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twina and faith2, thanks for raising this issue again. there are some of us who needed a hysterectomy because there weren't other good options for protecting our health, but many others think it's not a big deal and also, mistakenly, think that it will cure all their problems. every woman should get a second opinion before major surgery. i think it's great that the internet and message boards like these exist so that women can think about other options, and be encouraged to question their doctors about options along with the pros and cons of those options.

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• By PJ2
• Posted February 18, 2009 at 8:20 pm
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I completely agree. I was told by two doctors before I opted for LEEP that I would need to have a hysterectomy. I opted out and went to Kaiser Foundation, as at the time of my diagnosis 10 years ago, they were doing the most advanced testing and care. Turns out I was right to do what I did, even though a few other doctors told me it was invasive and I would need chemo and radiation. All I needed turns out was a LEEP.

I think we all need to better informed about what we are in for before we consent to any kind of surgery, as it seems the doctor 90 percent of the time suggests it is no bid deal, as if to convice you that cutting away part of your body is no big deal. Like the statement you can live without it is makes us feel better.

Anyway, I appreciate you bringing light to this topic. Thanks for the post!!

P

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