Why we need awareness #6

Three years ago I sought the advice of a trusted, and seemingly competent, gynecologist. The pain was well over 20 on a 10-point scale, and like many women I’ve heard from over the years, I had “given up”. I was done! I wanted this busted uterus gone from my body. I wanted those blasted, estrogen producing ovaries out of my body. And I wanted, more than anything in the world, for this endometriosis to stop cursing me with monthly agony. I just wanted to be free from being chronically ill.

It was at the consultation when my physician’s nurse practitioner closed the door gently behind her and asked me, “is this really what you want?”

Of course it was! I begged for this! I pleaded and screamed and kicked my feet until I found a gynecologist who would do this surgery on someone under 40. Was this lady daft?

She must have taken my look of “wtf?!?” to mean I was unsure. Either that, or she just didn’t care. She was looking out for her patient and holding true to the first tenet of medicine  -“first, do no harm”.  I remember her heavy sigh as she took my hand in hers and said, “you should not get this hysterectomy.”

Who was she?!?! She had no clue about my pain. She had no clue how this affected my life. Then she said, “I have been where you are now and I have seen the other side. It is not one to walk down lightly.”

She proceeded to recount her experience with endometriosis. Her tale was strikingly similar to my own, and to many other women with the disease. Years of heavy, painful periods. Days spent sitting out of life, clinging to heating pads and pain reliever bottles. Treatments tried and failed. Being a spectator in ones own life.

She then told me that having a hysterectomy was akin to buying another used car when your previous junker has clunked out. With your current car, you know what you’re getting. You learn to know its noises, and how to get it started even when it makes that “put-put put ” sound or smoke bellows out the exhaust pipe. But when you trade it in – for a hysterectomy – there can come all these new problems – problems you couldn’t conceive of. And there is no Lemon Law. They can’t graft back in your ovaries – your uterus. There is no turning back. And you could awaken in that recovery room  a miserable mess. And she described the sudden loss of estrogen – like going 80 and slamming on the brakes.

And hormone replacement therapy increases the risk for heart disease and cancers. And one must weight the decision to have a hysterectomy with the possibility of life without estrogen.

I left her office that day confused. I took a long, hard look into my life with endometriosis. A very long look. And I came to the realization that my endometriosis – much like an old car – is predictable. I’ve lived with it for so long I know how it acts, when it acts, and how to mask it. I know what works, what doesn’t, and what my body will not handle. And I made the personal decision not to cross into the unknown frontier. No thank you Captain Kirk, but I will not be going boldly where others have gone before.

And I stress, this is a personal decision. Some cases may warrant a hysterectomy. This is something for you and your physician to work through.

But we need more awareness as to the myriad treatments available. I was told Nuvaring failed, BCP failed, the shot failed… time for surgery. They gave up and I almost gave up on my self.

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6 responses to “Why we need awareness #6

  1. I just do not understand how many people,lay-persons but even dr. and nurses seem to believe a hysterotomy is a cure for endo. I was not even diagnosed until may 2009 but up until then i kept having painful ovarian cysts. Dealing with those cysts on and off lasted from 2006-2009. I was recently told by an obgyn/gyn that i had stage 4 endo and he suggested a hyster. However from my last lap surgery with him i know i have it in other areas besides my uterus, my cul-de-sac and even my bowel. I think it is stupid and naive to suggest just by removing ones uterus,ovaries and tubes that that will slove the endo problem. My primary dr agrees with me and advises against a hyster.surgery. Too many women are pressurred into this surgery without knowing that even if you do it the endo can grow back.

    • Emily –

      It’s wonderful that your primary doctor is balancing out the misinformation from your gyno. It’s the easy-fix scenario. Surgeons especially have a mentality of cut it out and solve the problem. This isn’t always the case, though. And if you look at how women are treated medically and by whom after a hysterectomy, it’s often not the gynecologist treating the post-hyst patient. I’ve heard from countless women – my mother included – who were told “you have no uterus or ovaries, there’s nothing left for me to treat” and they are passed to the primary care… or to another specialist with a “it may be…”. My aunt-in-law has been through the ringer like this after her own hyst for endo! It’s ridiculous.

      If they could focus on what causes endometriosis, then they would have a better understanding of how to treat it.

  2. endochick-
    yes it seems very sad to me. Even my fabolous Primary dr is somewhat misinformed herself. I saw her last week and asked if my endo could be invading my scaitic nerve because I am having alot of pain there-left leg from hip down to thigh. She said no endo does not do that it only affects a womans reproductive organs. I simply nodded my head. Everything i have researched has told me that yes endo could spread throughout a womens body-even in some cases affecting the brain and lungs(that is very rare though) I do know that estrogen can cause the endo implants/tissue to grow. So I still just do not get why dr reccommend hyster/surgeries and then follow that up with artifical estrogen pills/patches ect. It makes no sense to me. With all the women who suffer from this condition it would be nice if there were more research and medications available. In Great Britain there is alot more of a movement on this disease. I can help but think/wonder if men went through this too would there be better treatments by now?

    • The UK movement is impressive. It’s slow going – and without it’s hitches – in the States. They’ll get there eventually. What we need globally is more awareness as to the need for more research and focus on finding the definitive cause of endometriosis. Only that way can be begin to properly treat it.

  3. @Endochick:

    Thank you for writing about this important topic. By definition, endometriosis is when there is misplaced endometrial tissue. In other words, when endometrial tissue is found anywhere other than the lining of the uterus (where it belongs). Therefore, removing the uterus does not address any misplaced endometrial tissue (unless it is misplaced on the outside of the uterus… which is one of the places I’ve had it removed from).

    Removing the uterus (with or without removing the ovaries and/or tubes) may give some women relief (albeit likely to be temporary) from symptoms like pain or heavy bleeding because there are no longer periods.

    However, any misplaced endometrial tissue will continue to be triggered if one or both ovaries are left in and/or if the woman takes hormone therapy following a hysterectomy.

    Even if a woman with endometriosis observes the recommended waiting period after a hysterectomy to initiate hormone therapy, there’s no guarantee that various symptoms will not persist/recur.

    In the cases of quite a few women I have spoken with over the years, there was no relief time at all following their hysterectomies. Also, recovery from the hysterectomy is often invaded by the symptoms of surgical menopause (which can be severe for some).

    Having the body go into a menopause so abruptly seems to be a shock to the system for many.

    This is not to say that hysterectomy is inappropriate for all.

    As you indicated, the decision to have a hysterectomy is a personal one.

    In my experience from talking with many endometriosis patients over the years, it is wise to get a second opinion at the very minimum before embarking on a major surgery that cannot be undone. From 1992 (when I was diagnosed after 10 years of undiagnosed endometriosis) through 2008, I attended endometriosis support group meetings… every single month.

    In that time, I met many women who had hysterectomies or who were considering having them and were investigating their options. I met a few women who had had hysterectomies and were glad they did. Unfortunately, I also met a large number of women who had had hysterectomies and regretted them. I fully realize that the population I interacted with was skewed.

    In other words, the women who felt their hysterectomies were helpful were far less likely to bother taking the time to attend an endometriosis support group meeting at all. I realize this. Nevertheless, I was haunted by those who lived with serious regrets.

    From 2001-2008, I was an endometriosis support group leader. I took frequent phone calls and emails from women between meetings. Some of them were feeling “in crisis” and in need of “between-meeting support”.

    A fair number of these women were either struggling with deciding whether or not to have a hysterectomy or had had one and regretted it.

    No matter what any doctors have told me over the years (and some have minimized and trivialized hysterectomies, in my opinion), I will always be haunted by the stories I heard from the women in my support groups.

    Since I started writing my blog in 2008, I have heard more such stories. I’ve heard a few stories of women who found hysterectomies helpful as well.

    Unfortunately, again, the women who I have encountered tend to fall in the “regretting hysterectomy” group more often than the “glad I had a hysterectomy” group.

    This is not a right or wrong issue and I never, ever judge a woman for what she decides is right for her body with regard to a hysterectomy.

    My belief is simply that it is imperative for women to make informed decisions about hysterectomies and for them to be prepared for the various possible outcomes.

    Thank you for bringing up this important topic. It really is very personal. In my experience, it is also a sensitive subject for many. Sadly, I have met many women who felt hurt and/or judged by people who they perceived as “anti-hysterectomy”.

    Like you said, the decision to have a hysterectomy/not have a hysterectomy is one the patient needs to make (in consultation with her doctor/s). Ultimately, no matter what her doctor/s say, it is her body. The patient needs to follow her gut and do what feels right for her.

    Hysterectomies are very over-performed (source: Newsweek article – http://www.newsweek.com/2009/02/25/female-trouble.html).

    Sadly, not everyone has a nurse practitioner like you had – who has personal experience and who “slows the patient down” from the panicked thoughts of, “I have to get a hysterectomy. I can’t live like this anymore”.

    Some doctors pressure patients to get a hysterectomy (for a variety of reasons… some financial). The patient is the one who has to live with the consequences if having the surgery does more harm than good.

    Thank you again for a thought-provoking post!

    @Emily:

    Have you tried physical therapy for your sciatic pain? While it’s very true that endo can go many places, some patients with endo have referred pain type issues, pelvic floor dysfunction, etc. that respond well to PT. I had physical therapy for pelvic pain and was diagnosed with pelvic floor pain dysfunction. It’s possible that PT might help give you some pain relief. It might be worth discussing with your primary (assuming you need a referral) or hunting down a PT who is properly trained in this type of specialized PT. Just a thought. I hope you get some relief soon!

    Jeanne

    • Any surgical option, or medicinal therapy, is completely up to the person seeking it. Our pain and how we handle it is unique – no one can tell you how you feel. We may have similar pain, but our thresholds and ways of dealing with it are different. I know a woman who endured endometriosis until menopause. She was in pain but she had a very high pain threshold. Other women cringe at a 4/10.

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