Monday, February 7, 2011

Recovery Journal: Six months later

This week marks six months since I had surgery to remove my ovaries and uterus plunging me into surgical menopause. I have had a number of requests for additional details of my recovery and menopause issues so I decided it is time for an update.  Last August I posted three "recovery journal" blogs about the surgery and its initial aftermath.  They can be found here: Part IPart IIPart III. By a month after surgery I was feeling pretty normal, back into my exercise routine and preparing for the Kickin' Cancer 5k Run, which took place six weeks after my surgery.

A few days before the run I made my post-op trip to see my surgeon and fully expected to be given the all clear to resume normal sexual activity.  But alas, twas not to be.  I had developed a granuloma at the top of the vaginal cuff that needed additional time to heal.  My doctor swabbed it with a medicine that he said would speed healing and told me to return to see my gynecologist in another four weeks.  In the meantime, no sex.  In light of the fact that many women return to sexual activity four to six weeks after surgery, I was surprised by the news that I would be out of commission for 10 weeks.  But once I checked with a few other friends I learned that 8 to 12 weeks is not uncommon.

At 10 weeks I returned to see my gynecologist, who had assisted with the surgery, and was told that the granuloma was still not fully healed but should be sufficiently healed to resume sexual activity.  He also swabbed it with medicine and sent me on my way.  Because my husband would be appalled if the details of our bedroom activities were posted on the Web I am afraid I will have to leave out the graphic stuff.  Suffice it to say that all was not smooth sailing and I found myself back in my doctor's office two weeks later because intercourse was painful and resulted in increasing amounts of blood each time.  The granuloma had not healed and the scab that had formed had rubbed off resulting in pain and bleeding.  This time my doctor swabbed two different medications on it but because the wound was raw,  this was painful.  We waited a week and tried again: less blood but still painful.  A few weeks later I was back in my doctor's office looking for solutions.

The last time I saw my gynecologist every three to four weeks I was pregnant and the visits were fun, an opportunity to hear the baby's heart beat and measure how much I had grown.  Now, I was unhappy and looking for solutions to a complication I had never heard of until it happened to me. I told one friend that if I had known this was going to happen to me I would have hung on to my ovaries for a few more years. At my December visit my doctor's face mirrored my disappointment when he walked through the door.

"Still?" he said.


The granuloma, however, was almost fully healed and no longer likely to be the sole source of my problems, although he did paint it with the medication again just for good measure.  Then we talked about what happens to vaginal tissues without enough estrogen: lack of lubrication, lack of elasticity, and thin tissues that can tear easily and bleed.  We talked about the pros and cons of various lubricants (yes I had a variety on hand and yes, we had been using them liberally) then we turned to the issue of estrogen.  I am using an estradiol patch at a moderate level, which we could increase, or we could try targeted estrogen in the vagina, which would not raise my circulating estrogen levels but should dramatically improve the vaginal tissues.  My other menopause are under control; no massive hot flashes although I don't sleep as well and I often wake up hot, not melting just warm enough to be uncomfortable and awake.  We opted for the last solution and I left with a package of Vagifem tables to use twice a week.

The good news is that with the dawning of 2011, things seem to be steadily improving; not great, not what they were before surgery, but good and improving.  Many women I know have said that it takes a period of adjustment to "a new normal" and that was certainly the case after my mastectomies.  Somewhere between six months and a year after surgery my sex life was as good as before the surgery. Different, but equally good.  I expect the same thing will happen with this surgery; sometime over the next few months I will become totally comfortable with the "new normal."

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  1. Thanks Joi for this post. It makes me feel better that someone else has many of the same issues I have.

  2. Hi Joi. I have been reading through your blog and am once again grateful for people like you who share their stories with other BRCA + people. I have gone over Teri's blog as well, and was surprised to see that you know each other! She has been so helpful in answering my questions....I am scheduled for a complete hysterectomy and removing ovaries on Feb 16/11

    I am 45 and am scared about menopause!! more than the surgery and recovery itself actually. I will be able to have it done laproscopically so am glad that will be an easier recovery. I have not made the decision to have a bilateral mastectomy done at this point, thought I would deal with the ovaries first. My mom is a 30+ year survivor of BC!! She is supportive of my decision to have the hysterectomy done, as is my husband of 25 years.

    I am still a little confused about HRT....I feel that I want to prepare for the worst though, and want to be sure about what I am asking for. Are there any bioidentical estrogen products that are safe for us who still have breasts?? Is it better to use bioidentical estrogen rather than Premarin or something????

    It would be great to hear back from you, and I will also cruise over to Teri's blog again to search for some answers there. I think I will have to get a copy of the book Positive Results.

    Again, thanks for the time you take in blogging,,,it really is a great tool and has been so helpful to me as I have been looking online for answers.

    I feel better about my decision and am praying that I will be able to go into surgery calm, relaxed and informed!

    From Alberta, Canada

  3. Marlene,

    Thanks for posting, although I am sorry your are also having complications. Hang in there, I do think there is a light at the end of the tunnel.


  4. Dawna,

    I couldn't recommend any specific product, partly because I do not know the Canadian system and partly because only your doctor can make specific medical recommendations for you. But there are a few things to keep in mind while having this discussion with your doctor. First, "bioidentical" hormones are a bit of a misnomer and different people mean different things by use of the term. Some mean hormones, whether naturally derived or synthetic, that are chemically identical to the hormones your body produces while other refer to individually compounded products. in general, there are a number of commercially prepared products, both oral and transdermal, that are estradiol estrogen, which is identical to one of the estrogens produced by your body naturally. If you have a hysterectomy with your bilateral salpingo oophorectomy then you will not need progesterone and one of these estrogen only products will likely work for you. But keep in mind that if your symptoms are not under control that you can go back to your doctor and try a different one or a different dose.

    My honest review of surgical menopause so far is that it is not at all what I had feared. Oh, and I totally do not miss the mood swings of PMS.

    Good luck,

  5. Thanks for your reply Joi, its reassurring to know that I may have more fears than I will have to worry about ;)

    Heres hoping for the best!!

  6. Dawna,

    We all have that fear of the unknown when we are facing this. That coupled with hearing the stories of a few bad experiences can make it particularly difficult. While no one can ever promise that you won't have complications, just know that they do not happen to everyone and even if one or more happen to you that there are ways of dealing with almost any situation and that the key is being open with your doctor or doctors and seeking solutions.


  7. Hi Joi... I am back home from having my surgery to have ovaries and fallopian tubes hot flashes yet!! I am healing quite nicely and am glad to be home,,,was only a day surgery for me.

    The library called and told me that your book came in for I have been taking it easy and reading your book! What a great source of information! My surgeon decided it was not necessary to take my uterus and I am hoping that was the right thing to do. As it turns out, with examining me because I had questions about prolapse, she found that my bladder is moderately prolapsing. This was just about an hour before I was to go in for surgery for what I thought would be a complete hysterectomy. I was a little rattled, but knew the important part of the surgery was to get my ovaries and tubes out. I may have to face a bladder repair at which time I am understanding that I can decide further about the uterus. From what I am reading and understanding, drs have mixed feelings about taking the uterus as the brca1 gene is not connected to uterian or cervical cancer. Am I right in my understanding of this? Thanks for your reply :)

    Are you taking any hormones? that will be my next step once I see what menopause symptoms I will have,,,when did yours start to show up after your surgery??

  8. Dawna,

    Congratulations on being through with surgery. Now, on to recovery!

    It sounds like your doctor made the right recommendation for you, these are very individual decisions based totally on each woman's particular circumstances. You are right that most doctors don't believe that uterine cancer is linked to BRCA. I did a blog on that recently also called "Is the jury still out?"

    I did elect to take hormones and started on a very low dose, about 3 weeks after my surgery we realized it was not controlling my symptoms and we tweaked the dose slightly and I am now totally normal. I don't really recall when my first symptoms showed up as they were mixed up with the surgical recovery. The hormone issue is even more individual than any of the other decisions so work with your doctor. Tell her what is happening with you and realize that what may work for one woman may not be right for another.

    I am so glad you are finding the book helpful.

    Heal well,

  9. Thanks for your reply Joi. I didn't know that there was a gynecologist/oncologist doctor choice that may have been better to have on my case???? As far as I know my Dr is just a gynecologist. I will just have to pray and trust that they got as much tissue as possible when removing the fallopian tubes?

    Have you ever heard of being put on the pill to monitor your menopause symptoms? I think I am almost wishing that I had my uterus removed as well now??? Oh, I feel so confused!!

    I guess I just have to have all my questions lined up when I talk to her about HRT.

    Confused in Aberta... Dawna

  10. Hi Dawna,

    As we discuss in Positive Results, while a gynecologic oncologist is the ideal person to perform prophylactic surgery on a high-risk woman not everyone has access to one of these specialsits and most general gynecologists can do a competent job with the surgery. Just check to be sure that the pathology that was done on the removed tissue followed the high risk protocol for serial sectioning and you will have the best peace of mind that if a small something was there that it was found. Otherwise, don't stress about it.

    I have not heard of being put on the pill for menopause but that really means nothing as I am not an expert in this area, just another woman trying to manage my symptoms like you.

    Take your list of questions back to your doctor.
    Best of luck,

  11. Joi--

    This may be too personal a question to ask, but I'd love to know how you are faring now that more time has elapsed since your hysterectomy/oopherectomy. Have your boudoir issues resolved? I ask to quell my own fears. (Like you, I'm putting off the BSO until later, and having my breasts removed soon.)

    PS. Your book is so wonderful! I honestly do not know how I would have made it though all I needed to know after finding out I carry a BRCA2 mutation without it!


    Mary in San Francisco

    1. Mary,

      Thanks for the compliment on the book, I am so thrilled that you have found it helpful.

      Two years after surgery I can say that I feel completely the same in most respects. I did not gain weight (which I feared) and I didn't become a menopausal mess (thanks to a little estrogen) so my overall assessment is that surgical menopause was far easier than I had expected. To answer your question about the boudoir issues the answer is yes and no. Yes, everything is fully functioning normally at this point but no in that my desire has not returned to what was my earlier normal. Fortunately my husband's desire has not been dampened at all so things are working out fine. :)


  12. Joi,

    Thanks for the response! Have you tried progesterone or testosterone? I have a friend who was "re-sparked" with a little progesterone, and I hear testosterone helps some women as well. Maybe you have another book in this topic?? ;-)

    Anyway--thank you again for your response, and take care.


  13. PS. You do know the post menopausal ovary in intact women is hormonally active. It produces androgens and perhaps a small amount of estrogen--not completely tapering off for many decades post menopause.

    1. Yes, I do know that natural menopause is a gradual tapering off of hormones that those of us who do surgical menopause do not get. No, I have not yet tried testosterone, although I too know friends who swear by it and say it has dramatically improved their libido. Fortunately the ovaries are not the body's only source for testosterone and testosterone supplementation can cause skin issues that I am not ready to tackle right now.

  14. Hello Joi Morris I'm 43 yrs. old and I had a radical hysterectomy, was a bad medical practice because I never has cancer issues, my doctor did this to me for grabbing money of my health insurance and put me in a surgical menopause. This was on December 8, 2014 I'm very depress and I know that my life is not going to be the same. I tried to suicide twice but I read this and you give to me hope. I want to ask you if you have your book in Spanish? Thank you for saving my life.

    1. So sorry to hear about your difficulties. No, Positive Results has not been translated into Spanish.