Undiagnosed Pain - Denied 3 times by Mayo

Posted by rlq_pain @rlq_pain, Sat, Jan 26 8:41am

My wife has lived with extreme, debilitating pain in her lower right quadrant for over two years and we don’t know where to go for help.
It started immediately after she had a simple procedure (removal of her Fallopian tubes). We have gone to over 30 doctors and attempted to be seen at the Mayo 3 times.

We still have no diagnosis and I feel that she is losing hope and the will to live. We always read about the wonderful diagnostic capabilities that Mayo has and how they are the one place that can help you find and answer when nobody else can. We have top notch insurance and are still turned down at Mayo saying simply “they can’t help us”. I can’t tell you how disheartening it is to get that news from Mayo. Every time I ask them, “If you can’t help us, then where can we go?”. They respond with “I don’t know, sorry”.

I could understand if she had a diagnosis and there was no known cure, but we are still looking for a diagnosis after 2 years of searching. Now that we have been repeatedly denied access to the top doctors there, we don’t know where to turn to. Any thoughts or suggestions would be greatly appreciated.

Has your wife been checked for various digestive problems, like Celiac Disease or even endometriosis. The only way endometriosis can be accurately diagnosed is through laparoscopic surgery (I have it). Do an experiment and have her go gluten free for 1 month. If the diet seems to help, then have her checked by a GI specialist for Celiac or other dietary problems. It is a difficult diet, and requires no breads or anything made with flour, UNLESS it is gluten free flour.
Have you tried other types of doctors. I have an osteopath (a doctor that practices natural methods and medical methods). Out of 4 doctors, this osteopath is the only one who found out that i had endometriosis. She performed tests that medical doctors did not, and discovered the endometriosis had gone wild in my body and was rampant enough to form cysts. Surgery wasn't necessary for diagnosis, but was necessary for removal.
Since she's had her tubes removed, she could also be having phantom pain. Why did she have her tubes removed? Whatever that reason was, that same reason could be bothering her again.

Liked by Leonard, koryn

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I also started having severe pain when I had a tube removed. I went to several doctors and finally went to a GI specialist. He said I was having muscle spasms due to damaged nerves caused by the surgery. I also had Celiac Disease. I was given a probioitc and went gluten free.

Liked by Leonard

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@airey2

I also started having severe pain when I had a tube removed. I went to several doctors and finally went to a GI specialist. He said I was having muscle spasms due to damaged nerves caused by the surgery. I also had Celiac Disease. I was given a probioitc and went gluten free.

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Thanks airey2 for your response. Its interesting that you mention muscle spasms due to damaged nerves being found by your GI specialist. When we went to the GI doctor, they asked if there was any blood in her stool. Since there wasn't, they didn't think it was worthwhile to do a colonoscopy and sent us on our way. What tests/assessment did the GI specialists do to identify the muscle spasms/damaged nerves? When you would experience pain, about how long would an episode of pain last for you? Maybe we should try visiting a different GI doctor and seeing what they can test?

She got her tubes removed because she also has dysautonomia and was told she would not be able to carry a child. Then when visiting the OBGYN, she was advised that removing the tubes could potentially reduce her chance of ovarian cancer because it sometimes starts in the fallopian tubes. We were told multiple times it was a simple procedure with minimal risks of complications.

A few months into the pain (i.e. after the surgery) we did try adjusting her diet. She has many food sensitivities to begin with, so we thought going gluten free might reduce some inflammation or help in some way. We went on a shopping spree and replaced everything in the pantry with gluten free alternatives. She did it for about 3 weeks but without any change whatsoever in the episodes of pain. However, we did not do any probiotics in combination with the gluten free diet.

Thanks again for sharing your experience and taking the time to respond.

Liked by Leonard

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@rlq_pain

Thanks airey2 for your response. Its interesting that you mention muscle spasms due to damaged nerves being found by your GI specialist. When we went to the GI doctor, they asked if there was any blood in her stool. Since there wasn't, they didn't think it was worthwhile to do a colonoscopy and sent us on our way. What tests/assessment did the GI specialists do to identify the muscle spasms/damaged nerves? When you would experience pain, about how long would an episode of pain last for you? Maybe we should try visiting a different GI doctor and seeing what they can test?

She got her tubes removed because she also has dysautonomia and was told she would not be able to carry a child. Then when visiting the OBGYN, she was advised that removing the tubes could potentially reduce her chance of ovarian cancer because it sometimes starts in the fallopian tubes. We were told multiple times it was a simple procedure with minimal risks of complications.

A few months into the pain (i.e. after the surgery) we did try adjusting her diet. She has many food sensitivities to begin with, so we thought going gluten free might reduce some inflammation or help in some way. We went on a shopping spree and replaced everything in the pantry with gluten free alternatives. She did it for about 3 weeks but without any change whatsoever in the episodes of pain. However, we did not do any probiotics in combination with the gluten free diet.

Thanks again for sharing your experience and taking the time to respond.

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Please look into the Cleveland Clinic. I have read / heard good reports. https://my.clevelandclinic.org/ There are over 200 locations.

Liked by koryn

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You can always take your to the St. Mary's hospital where Mayo Physicains practice. You must be seen and treated if you walk into an emergency room on your own. lt is the law.Do not go by ambulance. rlq_pain @rlq_pain . I would like to share a story with you. https://www.usatoday.com/story/news/nation/2019/01/17/ambulance-diversion-deadly-consequences/2601373002/

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@rlq_pain I am so sorry to hear what your wife is going through. Mayo is a great hospital but there are many others that are also great. I presume you are close to Mayo or I would suggest my favored hospital, Mass General in Boston.
I think @annieecruz suggestion is very good. Just go there. Apparently if you are there they have to help you. Please let us know if you do and how things are going for your wife.
JK

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I too was "rejected" at Mayo – referred back to primary physician. I don't understand – I wanted a second opinion & my doc provided all the needed information/records, etc. So I'm done with Mayos! It seems you can't just request an appointment for another opinion …???

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@gtdez

I too was "rejected" at Mayo – referred back to primary physician. I don't understand – I wanted a second opinion & my doc provided all the needed information/records, etc. So I'm done with Mayos! It seems you can't just request an appointment for another opinion …???

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Hi @gtdez,
You're quite right. Because Mayo Clinic has more requests for appointments than available openings, other factors for requesting an appointment do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition, or for less complex conditions, the availability of care closer to home are important factors that are considered. Additionally, while one Mayo Clinic location may be at capacity another may not. If location is not a factor for you, you could inquire about another Mayo location than the one you first contacted.

I noticed in another post you made that you said you are dealing with "osteo/inflammatory & neuropathy". You may be interested in joining the discussions in the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/

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