The callousness of the two surgeons is what remains

When I was seventeen, I developed a medical problem due to no fault of my own. It was painful, it was embarrassing, and when it became uncomfortable enough to disrupt my life, I went to see a well known surgeon downtown.

The specialist, tucked away in the hallow halls of academia, stared down at me past a pair of spectacles perched at the end of his ever-protruding nose. When he examined the area, he spoke in a measured and controlled manner.

“It’s really kind of disgusting, actually.”

These were not the words a self-conscious, suffering teenager wanted to hear.

He then proceeded to do an uncomfortable, totally unnecessary procedure, to “rule out other things” even though the diagnosis was obvious. He eventually offered a series of treatments. I returned to the office once a month, and low and behold the symptoms abated. I felt more comfortable. Maybe this nightmare was finally over.

When September came, it was time to go to college, I still needed a few more treatments. I arranged to see a specialist at the university because I would not be able to travel back to Chicago. Although the new surgeon was no more affable, he showed up on time and asked few questions.

Unfortunately, the symptoms took a turn for the worse. I trekked back to the hospital, and sat impatiently in the specialist’s office. After waiting for over an hour, he entered the room, didn’t bother to examine me, and said I would need surgery. The surgery would be minor, but recovery would take several months.

I immediately called the doctor from back home. After the two surgeons talked on the phone, it became clear that the second had never clearly identified the issue, and was treating blindly based on the previously established diagnosis. He offered surgery out of desperation without actually visualizing the problem.

Needless to say, I walked out of the office and never returned to either surgeon again. I did my best to treat my own symptoms, and six months later I was better. Nearly a quarter of a century later, the problem has never reoccurred.

I often think of these experiences when opening the door to an exam room to see a patient.

Many of the details of the offices, the personal characteristics of the physicians, or even the quantity and quality of the pain have disappeared.

What remains after all these years is not the suffering caused by the particular medical malady, but the callousness of the two surgeons who treated me.

Jordan Grumet is an internal medicine physician and founder, CrisisMD.  He blogs at In My Humble Opinion.

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  • SherryH

    I went to a podiatrist for plantar fasciitis. The pain was debilitating. On the first visit she diagnosed me and gave me a sheet of stretches and sent me on my way. On the second, she never suggested any other alternative form of treatment. She moved my foot around and said, “If it doesn’t get better in six months we’ll just open it up and slice it in half” and then she made a swooshing sound and slicing motion with her hand. I never went back to that office.

  • Thomas D Guastavino

    As long as we as physicians continue this circular firing squad attitude we have developed, especially primaries on surgeons and specialists, I might as well take a few shots of my own.
    When I was17 I developed a slow onset, atruamatic pain to my right shoulder. What was unusual was that it was worse at night and a single aspirin dramatically decreased the pain. My parents took me to their GP who after a cursory examination prescribed something for the pain. I remember the medication doing very little other then making me sleepy. When this medication ran out my parents took me back to this GP who after an even more cursory exam prescribed then same medication. Once again it had little effect on the pain and once again when it ran out my parents took me back to the same GP. This time there was no exam, a two minute visit, just another prescription. Being 17 and given the fact that the aspirin did relieve the pain I didnt think that much of it.
    After this we moved out of the area which meantnew doctors. When my pain returned on the suggestion of one of our new neighbors we went directly to an Orthopedic Surgeon. I remember being there no more then two minutes when the surgeon raised his hand and asked me whether aspirin relieved the pain. When I said dramatically he told me immediately what it was, a rare tumor called an Osteoid Osteoma. Acouple of tests later I went through surgery to remove the tumor and the problem was solved.
    Moral. There are good and bad doctors on every specialty. Take the time to find the right one if you are not satisfied.

    • DoubtfulGuest

      Sorry you had to wait so long, Dr. Guastavino. Good PCPs are gold. And there are many. But I’ve also had some who leaned heavily against that gate no matter what was going on. Was this experience a pivotal factor in choosing your specialty?

      • Thomas D Guastavino

        At the time, no, but later on when I choose orthopedics I fondly recalled this encounter. I choose ortho because it was one of the few specialties that afforded the opportunity to actually fix and cure patients problems. I also liked the fact that I could treat patients of all ages and explore all avenues of treatment.

    • Patient Kit

      Regarding doctors’ circular firing squad attitude, as a patient, I find the hostility between primary care docs and surgeons/specialists to be both fascinating and frightening. I would naively hope for a more collaborative attitude both in individual patient care and in standing up against the powers that be in our healthcare system.

      This blog has been a real eye opener about the apparent rampant animosity between primary care and specialists. Between pitting doctors and patients against each other and pitting primaries and specialists against each other, the classic divide and conquer strategy is alive and kicking and serving TPTB well. :-(((((

      • Thomas D Guastavino

        Excellent and astute observation.

        • Patient Kit

          Thanks! I’m new around here but hope to add a voice with some patient perspective to the conversation.

      • DoubtfulGuest

        You win the internets today.

  • DoubtfulGuest

    I had a good experience with the same surgery for a different problem. I agree yours was inappropriate. I’m sorry you went through that. I wonder what kind of follow up care you’re getting.

  • DoubtfulGuest

    I meant HRT and PT if needed, plus a doctor who actually cares how you are feeling. I don’t want to tell you what to do or think about your situation. I’d be just as PO’ed if I were you and it doesn’t matter what I think anyway. It’s just that I had the opposite experience. Almost all your comments relate back to this topic. I can’t tell what your objective is. Is it to stop women from having hysterectomies at all? Only for cancer? Or do you just want to stop the ones in which women are coerced and taken advantage of? I’d agree with you on that last one, I’ve just never seen that myself. I endured 20 years of painful symptoms and there were quite a few hurdles for me to get the surgery. Your situation is more common, I’m sure, it’s just not completely black and white.

    • disqus_question_everything

      I am sorry that you dealt with pain for 20 years. I did not have that experience. I believe my insurance company is partly to blame as they would not divulge what my doctor submitted to get authorization.

      In answer to your questions – “Is it to stop women from having hysterectomies at all? Only for cancer?”

      No. But MOST of them are unwarranted and, based on my connections with many women, most were incorrectly told they “needed” one or it was the “best” option. They were not given all the facts about their condition and/or the medically documented long-term risks and consequences of organ removal. The number of hysterectomy forums is a testament to the problems caused by hysterectomy and/or ovary removal.

      1 in 3 women has a hysterectomy by age 60 and 1 in 2 by age 72. Over half of women are castrated at the same time. Yet female cancers are pretty rare (cervical is .7%, ovarian 1.4%, endometrial 2.7%) – http://seer.cancer.gov/statfacts/index.html.

      For some women, the trade-offs of hysterectomy are worth it. But many do not realize the trade-offs and would have chosen to keep their organs. Many women with endometriosis are having hysterectomies under the guise that it is a cure or will greatly improve their pain only to be left with the pain and all the long-term health problems that ensue. Long-term effects of hysterectomy – http://www.medscape.com/viewarticle/805517

      BTW – Testicular cancer rates are about the same as ovarian cancer rates. Yet
      men do NOT have their testicles prophylactically removed. If this was
      being done, I can assure you it would not be for long.

      • DoubtfulGuest

        Ok, thank you. That sounds terribly underhanded of your insurance company. I am sorry. You make a lot of good points. Women’s health has a long way to go, yes. Medicine historically has a poor track record with women. Even now they say stuff that makes no sense, like a fibroid shouldn’t bother you until it’s the size of a 12-week pregnancy…there’s no comparison. If a woman has a 12-week pregnancy there are hormone changes that make things more flexible inside. Plus, she would presumably *want* a baby and would have one after just nine months. How can one compare a fibroid to a baby, particularly if it’s inflamed? Also with endometriosis, it affects so many women they really need to understand it better. Why should we only have treatments that make us feel crappy? The options now are not that great.

        I don’t argue with you about any of this. I just get confused when I see your posts because I feel like myself after the surgery. The only external changes are scars, and I barely feel them or see them. You’re right there are lots more women who have good reason to regret the surgery. Way before surgery, my endocrine system got all messed up by a metabolic disease I was born with. I feel much better and have an easier time with no cycle anymore and just using an estrogen patch, plus thyroid meds and steroids. I can’t feel a difference from before surgery except for the lack of pain. And it has been several years now with no recurrence of symptoms. My doctors were extremely careful. So I wondered if any more could be done for you medically so you could feel as well as possible. But I didn’t mean to be nosy. And I won’t argue with you anymore because you are right about a lot of things.

  • DoubtfulGuest

    I take hydrocortisone for an adrenal insufficiency secondary to a mitochondrial disease, which probably is the underlying cause of all my health problems. It’s not an obvious connection to the endometriosis, but it may have something to do with oxidative damage. I’ve been taking thyroid replacement since I was 17. Thyroid is completely fried by Hashimoto’s…no function left at all. I had hot flashes to some extent since my late 20s. By the time I had organs removed, the endometriosis had completely taken over one ovary (like that’s all there was inside of it) , and the other was in poor shape. Also had some inflamed (smallish) fibroids and other minor problems that just added to the Do Not Want feeling about my reproductive organs. I’ve been lucky to have no recurrence of symptoms thus far but you’re right there is always some risk over time. I actually had two surgeons, the laparoscopic hysterectomy expert and another to do a ‘search and destroy’ on the endometriosis with her CO2 laser. That seemed to go well. I started out on a combo of progestin and estrogen patch for several months after surgery. Then switched to estrogen only. I did have to increase it to the highest regular dose (the largest patch) and I don’t have any symptoms like you describe. That is why I wondered if more could be done for you. Do you have a doctor who will let you try different hormone formulations and doses til those symptoms improve? We’re each so different in our requirements. Skeletal changes? Do you have bone density loss? I thought a fairly low dose of E was supposed to prevent that. My endocrinologist and I have been adjusting the thyroid meds a lot but we did find a dose that I feel well on. They expect my pituitary function to decrease more over time, so we’ll almost surely have to make adjustments in the future. Now, I have had some abdominal muscle weakness and that was just from a TLH. But it is not bad like you describe. The hospital I go to also had me do some pelvic floor PT beforehand. This was a bit odd but completely professional and I think it helped. If you are having hormonal or structural problems from the surgery, they really ought to help you more. I did have some problems with my scars sticking to the underlying tissue and kind of pulling in an uncomfortable way. I looked up how to do myofascial self massage/adjustments and have pretty much solved that problem on my own. My e-mail address is in my profile if you think I could help with anything or send you any information.

  • DoubtfulGuest

    I had a longer reply to you and then edited it down because it was way too long. I have a life-long mitochondrial disease and am also being treated for that. My adrenal function was fluctuating years before surgery. I took steroids off and on years before surgery because a diagnosis of Addison’s disease was considered and ruled out. Sometimes prednisone, but I do better on hydrocortisone. I’ve had Hashimoto’s thyroiditis since my teens. Yes, my endocrine levels are all good now. I will always have some fatigue and muscle weakness from the mitochondrial disease, but all my symptoms are either gone or improved since the surgery. My pituitary is gradually failing as an effect of the mitochondrial disease, so I may need adjustments later. I should be good for a few years at least. I have no problems with skin or hair. The year after surgery was difficult, but I traveled out of the country for work and did lots of other tiring activities. I was never completely without hormone replacement. Normal bone density. By skeletal structure do you mean alignment of spine, hips, and so on? My surgeon was really good. We talked beforehand about how he severs and reattaches the ligaments…can’t recall details but he was very careful. If anything my posture is better than before because I’m not hunched over in pain with adhesions, etc. My situation is kind of unusual so I’d never push anyone else to have it. I do know one other person who is symptom-free years after Hyst/BSO for endometriosis. I don’t think what happened to you is okay at all, I just wonder if your current doctors or another doctor could do a complete endocrine check and take better care of you. It seems like you should be able to expect at least some improvement in the symptoms you mentioned.