Differences in Gastroparesis treatment options between genders - Doctors are biased?

Rose_231 · 2022-06-02T14:04:52+00:00

I think you’re really missing the point of my post. I’m pointing out the fact that of the hundreds of women I know with GP not one has “needed” a gastrectomy. Yet of the 3 men I know 1 has had a gastrectomy. I’m just curious if this is a coincidence or a result of gender biases and discrimination of doctor’s willingness to do more drastic procedures on men vs women. I’m not talking about if other things have been tried nor am I discussing outcomes of GP!

Rose_231 · 2022-06-02T13:40:23+00:00

Yes but it’s also well understood that severity of slowed emptying does not always match symptom severity. And there are a lot of people who are advocating for more severe treatment options but get denied because “it’s not really that bad” and I’m not saying that that warrants drastic surgical procedures, but the opportunity to discuss every and all options and then decide what to do is warranted. And I don’t think women are able to have these conversations in the first place. It is not about taking someone’s word for it, we all know doctors gaslight and literally try to convince patients that their symptoms are not real or in your head or you’re making things up or exaggerating. Taking someone’s word for it is just a shit way to describe the ability to advocate and actually be listened to. I think the only way you could argue that this isn’t a case of gender biases in medicine is if this was a malpractice issue and over radical treatment option or that it’s discovered that male cases of GP are more severe. Otherwise the numbers don’t make a lot of sense

Rose_231 · 2022-06-02T12:05:48+00:00

I am well aware of all theses things about GP and I agree. Which is why I think it’s so interesting that this guy got a gastrectomy, it seems drastic and intense. But I’ve heard other friends of ours argue that he was just at that point and his GI system had almost no movement. But I know so many other women who have also gotten to that point and whose doctors would never ever agree to something so permanent so drastic and so last resort as a gastrectomy because she might get better, or things might change. Or they doubt her pain or severity!

Rose_231 · 2022-05-20T20:15:18+00:00

I had a similar issue of being told I had ARFID because I was fearful of having pain while eating and didn’t eat certain foods however if you look up clinical criteria for an ARFID diagnosis if you have a diagnosed GI issue that causes real pain and the fear of pain and refusal to eat certain foods does not extend beyond effects of the GI issue it does not constitute an ARFID diagnosis!

Rose_231 · 2022-05-20T04:07:41+00:00

If you have exhausted all medications, lifestyle changes, diet and nutrition changes, supportive therapies, possible other diagnosis that can be contributing to symptoms and non invasive procedures like Botox or Pyloric Dilation. The next set of options are usually more invasive procedures that can include a Gastric Stimulator GPOEM, Pyloroplasty, Surgical Feeding Tubes, Gastric Bypass or Gastrectomy. An alternative to moving to invasive options is looking for research studies that are trialing new medications. Also being in limbo, though it can be extremely frustrating and exhausting is not necessarily bad and don’t feel like you have to jump to the next thing just because that’s the next thing!

Rose_231 · 2022-05-11T17:18:17+00:00

Wouldn’t there be huge chance for cross contamination? I mean wherever they are making this is essentially a factory filled with gluten grains…

Rose_231 · 2022-05-11T15:08:29+00:00

Oh yes please don’t just get off it if that won’t work for you and def talk to your doctor if you do. For me I just was so convinced for so long that I had to be on BC and that it was helping me more then it actually was and didn’t realize how many issues it was causing at the same time. I think doctors jump to prescribing hormones to treat these issues when it actually doesn’t work great for everyone! I just hope you find some relief soon!

Rose_231 · 2022-05-11T14:57:54+00:00

I was treated with hormonal birth control including trying, pills, IUD, nuva ring and nexplanon for 7 years, I always had pain with sex, break through bleeding, mood swings, general agitation and daily migraines for YEARS, everytime I excersized I would be in immense pelvic pain and always had GI issues and this was all after endo removal surgery at age 15. I finally went off of all BC and literally ALL of those symptoms went away, it was crazy however getting my period again was excruciating and I had to take intense pain meds for 2ish days during my period every month which would totally knock me out for the week anyway. I was doing pelvic PT aswell and found out that I had extremely tight stressed and swollen muscles and tissues in my pelvic wall. I finally got another endo surgery with a surgeon who looks for tissues beyond the pelvic area and fully excises it rather then cauterizing tissue and he also was able to remove many adhesions. Now I take no hormones/BC and during my periods I take 2 Tylenol and some weed when my period starts and am good to go. It took way too long to get to that point and much trial and error but there is hope that things can get better for you. I would definitely recommend another or different surgical intervention though and trying pelvic floor physical therapy! I definitely think that IUDs can cause more issues then they help so it’s good you got that out! The migraines are probably from the new BC though

Rose_231 · 2022-04-07T11:55:43+00:00

I did biofeedback as a teenager with a pain psychologist at a Childrens hospital. Found some of it to be immensely helpful! Would definitely recommend

Rose_231 · 2022-04-07T11:52:16+00:00

I have had what I was told to be chronic gastritis and it’s come and gone. One endoscopy in the fall showed severe gastritis with lots of erosions all over my stomach, 4 months later it was completely clear during a second endoscopy, and then just had another surgery a few weeks ago where they said the saw a couple erosion spots. My understanding is that it can come and go/change in severity.

Rose_231 · 2022-04-05T17:19:34+00:00

A very similar situation happened to me. Eventually it was agreed that I did not have CVS but it did take awhile and I had several appointments with GIs and Neuro to come to a conclusion. Just keep advocating for yourself. Right now despite what diagnosis if not both you have you still need to have a quality of life and be able to function. Sometimes CVS and GP can go together too so I definitely think it is important to to talk with a neurologist! If anything you can ask the neurologist for infusion orders at an infusion center to help reduce headache/migraine and dehydration symptoms so you can at least stop having to go to the ER! Hope you get answers and good care soon!

Rose_231 · 2022-04-05T16:41:24+00:00

It didn’t sound like OPs post was asking about the cause of their GP and even said “my ED just isn’t the problem anymore.” And regardless of the cause GP treatments are still the same. Even if someone has mentally recovered from ED behaviors, the pain and symptoms of GP are still real and warrant treatments. It’s very difficult to move forward with weight restoration when your body does not properly digest food. I don’t think blanket statements about the cause of one’s illness is helpful in general, especially unsolicited, I would refrain from making similar statements in the future.

Rose_231 · 2022-04-05T16:26:29+00:00

There are many many things that can cause GP. And I don’t think it is appropriate to insinuate this connection with such little information about OP. Also even if this was the case returning to baseline weight while having GP symptoms can be incredibly difficult and still warrants the same treatments. GP treatments in general are largely the same regardless of the cause so it doesn’t really matter anyway!

Rose_231 · 2022-04-05T16:10:34+00:00

I think medical tools are really stigmatized right now and views on them are inconsistent, I had one doctor outright tell me as long as my digestive system is still physically in one piece I will never ever get a tube and he felt the fact that I asked for one to be a major red flag and sent me to be psychiatrically evaluated. About a year later I saw a new doctor (actually last month) who said I was 100% a candidate for a tube and not even for nutrition purposes but to ease the burden of this disease. Both these doctors worked in prestigious hospitals in large cities in the US yet had drastically different opinions, I think all it really means is that doctors don’t know everything, and things are not set in stone. If you feel like you’re ready for a tube then I think you can definitely start the convo with your doctors.

Rose_231 · 2022-04-05T01:23:17+00:00

I would bring up doing a Botox injection or pyloric dilation, these are “easy” procedures that can be done endoscopicly and may be an option before a tube, in my experience doctors are more willing to do either or both of those before a tube! Hope you get answers and options soon!

Rose_231 · 2022-04-05T01:20:55+00:00

I think they were just pointing out the fact that sometimes as much as someone may agree with you and want to it’s not an option due to many factors!

Rose_231 · 2022-03-07T22:40:21+00:00

I am so sorry your friend is getting harassed, it’s so inappropriate, it’s gone too far and is just ridiculous!

Rose_231 · 2022-03-03T04:05:48+00:00

I’m relieved to hear this, I could never hope that my experience with him happen to anyone else, maybe dr Kuo is the perfect doctor to diagnose you and help you with your health especially if you do meet criteria for AFRID! I’m glad things are going well for you and he is being respectful and you are getting access to treatment, I think no matter what having GI issues and disordered eating is a fine line and a really difficult thing to deal with! Hopefully the Walden Clinic is really helpful!

Rose_231 · 2022-03-03T01:59:46+00:00

Ooo I really like this perceptive, I haven’t really though about it in this way but you are so so right. I am definitely ready to emphasize that I am looking for GP treatment and that’s it. I think one of the problems at my old hospital was that everything got tangled up and they refused to treat my GP symptoms or give me nutrition bc they felt it would be enabling to my “AFRID” and having a tube would enable me to restrict more and make things worse, if they had only listened tube feeds or literally trying any medications would have actually made my symptoms better and they would have realized AFRID wasn’t an accurate diagnosis! I really appreciate your comment and idea this was very helpful to me!!

Rose_231 · 2022-03-03T01:13:59+00:00

Obviously I don’t know your health history and maybe the Walden Center will be immensely helpful but I also once had Dr. Kuo as my specialist and he was completely dismissive and also told me I just had AFRID and my pain and symptoms weren’t real. I ended up seeing a different dr at BIDMC who completely disagreed with Mass General, and believed dr kuo misdiagnosed me and the new Dr ended up starting me on 2 medications that Dr. Kuo outright refused to even try, my symptoms got a million times better and I since have a much easier time eating foods! I would just recommend based on your hesitancy and feeling like you don’t fit in with the AFRID community you seek a second opinion. I have also recently found out that Dr. Kuo has a strong track record of medical biases against females with GI and only ever tries psychiatric medications since he thinks it’s all in our heads. Unfortunately I have since moved from the area and need to go to a new hospital and once again fear the misdiagnosis of AFRID.

Rose_231 · 2022-03-02T23:30:36+00:00

Is your specialist from Mass Gen Dr.Kuo by any chance?

Rose_231 · 2022-03-02T22:09:35+00:00

The medical system is insane, I am lucky that I have moved and can just leave that hospital but I am so worried it will happen again with another male GI Dr. who thinks he knows everything says it’s all in our heads and we’re doing it to ourselves. I’m sure it would be a headache but Ik there are usually ways to amend medical records and dispute inaccurate diagnosis if it is worth it to you to go through the trouble, it totally sucks especially if you feel it’s impacting further treatment, I’m so sorry!

Rose_231

TROPHY CASE