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At Wits End - follow up to guidance welcome.

Truenortherngirl
Posts: 24
Joined: Feb 2020

I am truly at Wits End.  I went for yet another biopsy this morning following that marathon period of more than a month.  It was so painful!  The last two biopsies were hardly uncomfortable but this one was torture (even with a lidocaine injection).  Maybe because the endometrial stripe was just 5mm?  In any case, he had to do it twice to get sufficient tissue and he really dug in "to ensure he didn't miss a spot".  To add insult to injury, he informed I will need another in 4 months (that will be 4 uterine biopsies in roughly a year).  I am going to refuse...I can't do this anymore.  Give me a D&C or just give me a hysterectomy for crying out loud.  I even asked the doctor this morning, "how can I convince you to give me a D&C or even better a hysterectomy"?  He told me if he didn't get enough tissue this morning he will go to a D&C.  He won't even entertain the hysterectomy question.

I feel so utterly despondent.  I've tested positive for hyperplasia (albeit simple), my periods are completely wonky and the last one was a ridiculous marathon.  I've done the megestrol acetate only to return to ridiculous periods (along with unexplicable pain) and I can't find a doctor to do D&C and/or a hyterectomy.  At 52, I certainly don't need the plumbing any more!  My quality of life has diminished notably and I feel I have some legitamite medical reasons to justify a hysterectomy.  It seems the new norm in Canada appears to be that a hysterectomy should be a last resort (and a D&C).  In other words, you don't do a hysterectomy until you have atypia which by then you will likely have cancer too!  To top this all off...I am now a regular at The Breast Screening Clinic every 6 months due to two nodules in the right breast.

Do you know it was only about 6 or 7 years ago that my twin sister, who was fed up with heavy periods was offered a hysterectomy due to the inconvenience it caused her?!?  My concerns are much more sound that just "inconviences"!

Out of sheer frustration I have written my old family doctor (I've since moved away) to see if I can get a referral to a "favourable" gynecologist.  When I got into my car this morning following the biopsy I just burst into tears, more from pain but frustration too.  I CANNOT DO THIS ANYMORE!  Sorry, I just really needed to unload. :(

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2881
Joined: Mar 2013

TNgirl, my heart breaks for you.  This is always a good place to vent.  There are welcoming 'ears' here.  I remember one woman who lived in Canada throwing a fit (I think this was previously mentioned) and finally got a parp inhibitor she so desparately wanted to try (and it worked).  I am not that familiar with Canadian health care or political assistance that constiuents may ask for.  

 

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi, I can tell you the fit is coming down the pipe.  I resent having to go that route but I'm afraid at this point it might be spontaneous.  I generally have a calm demeanor and I never want to present as "hysterical" particularly when I have geniune reasons for concern.  I have also asked my old G.P. for a referral to a female physician.  I know it's a generalization but I can't help thinking that a women might be more sympathetic.  Thank you so much for listening!

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

The squeaky wheel gets the oil.  I would write to my local politicians.  If you are on FB I would talk about your displeasure with second rate tretment. You have to speak out.  NO details are needed.   It is sad for me to hear this.  i have a lot of Canadian relatives.  We arranged a colonoscopy for one of my nephews who had bloody stools for awhile and 4 grandparents with colon cancer.  He could not get in to see a gastroenterologist for the foreseeable future.   A D and C would be expensive in the US because it requries an anesthetic as far as I know.  What about a letter to the local paper.  I really do think exposing the problem will help.   I am so sorry to hear about your experience.  If you have to have a nother one, tell that so and so doctor you want analgesic prescribed beforehand.  No reason he can't prescribe a 292 to be taken before.

 

Truenortherngirl
Posts: 24
Joined: Feb 2020

Hi Forherself, I truly appreciate our Canadian Health Care system and wouldn't change it. I think it's important that everyone have access to at least a minimum level of health care but it does come with drawbacks.  There is simply too much demand to address disease before it happens even when the red flags are there.  This is why D&C's and hysterectomies are only offered when the biopsy comes back with atypia despite ongoing abnormal uterine bleeding, etc.  From what I've read, by the time atypia hyperplasia occurs there is also a concommitant cancer.  I actually would consider paying that extra amount if I could but with Covid in the picture I won't be crossing the border anytime soon.  

I don't have an particular axe to grind with this physician...I think it's the system.  Having said that, there must be a few gynecologists out there that are just a bit more sympathetic to my experiences.  They all share the same information and can clearly see the history of hyperplasia, multiple biopsies, etc.  I will simply have to refuse the next biopsy and I don't want to go back on the Megestrol.  I will have to eliminate the options and force them to give me a D&C and better a hysterectomy.  Thanks for responding.  TNGirl

MAbound
Posts: 1106
Joined: Jun 2016

What you are enduring sounds positively abusive. I think writing to your old doctor is an excellant idea and if that doesn't work, going public with what you are being put through and being put at risk for, as ForHerself suggests, sounds drastic, but necessary under the circumstances. I have a feeling you aren't the only one with such tales of problems with this particular doctor. At the very least you should write to your political representative, file a complaint with the Canadian medical association and perhaps even think of getting a lawyer involved. 

Truenortherngirl
Posts: 24
Joined: Feb 2020

I am ashamed to say I'm starting to feel sorry for myself...that is coming from a real "suck it up personality"!  I'm not sure what the norm is elsewhere...today the Dr wasn't even going to administer pain relief until I asked for it.  He was surprised that I knew that lidocaine was an option.  I can't even imagine how much more painful the biopsy would be without it?  I would have shot out of the stirrups.  How do women do this without pain relief?  If it cost more than what is covered through our health care then at least ask the patient if they don't mind paying the extra amount...give the option.  

I have to see him again in short order to get the biopsy results.  I will take this opportunity to say I will not have another one.  The other options must be considered.  I would rather catch flies with honey but it's quite clear vinegar will have to be the next go to.  Sad as it may be, publicity does work wonders too.  Thanks for your thoughts today and always.  

 

 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

is a family doctor.  He worked in Vancouver fo r3 years.  I asked him about you. He said go back to your family doctor and ask for a referral to a dfiferent gynecologist.  Your family doctor might be the answer.  They like to know when a specialaist is difficult

 

EZLiving66's picture
EZLiving66
Posts: 1469
Joined: Oct 2015

I understand your frustration. I have a good friend in Vancouver who was concerned about a dark mole on her young daughter's big toe. Their doctor said it was nothing to worry about and wouldn't refer them anywhere. She took her daughter along with her when she took her elderly father to HIS doctor and asked him to look at it. He promptly sent her to a specialist and it was cancer. If that doctor hadn't done anything, she was coming to the United States. She also said that it was good everyone got medical care but you'd better not get REALLY ill. 

I am so sorry you are going through this. At least with private insurance or Medicare, you can appeal if your insurance denies you coverage. And, of course, you can always pay cash which I did with our son.

I was lucky if you can call it lucky that my cancer was found with a biopsy. But my gynecologist told me that if she didn't find anything she would do the D&C as the next step.

I pray you will get the help you need and maybe a little hysterics is in order!!!

Love,

Eldri

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

It's a trend everywhere. My sister (in the U.S.) had the same difficulty and never got the hysterectomy she wanted for horrible bleeding that was confining her at home sometimes during perimenopause. I, however, went straight to D&C and then to gyn onc (with atypia) and then straight to hysterectomy. Sometimes a big part of it is the individual doctor. 

 

But I totally understand your desperation. At the same time I was having the bleeding, I was also having gallbladder attacks to the extent that I lost 30 pounds ... but still the surgeon thought it wasn't my gallbladder and didn't want to operate.  I know exactly what it's like to leave an appointment and cry in the car, because I could not go on with it. (Long story short surgeon was soooooo wrong).

MoeKay
Posts: 319
Joined: Feb 2004

TNGirl, I would recommend a second gynecologist opinion on how to proceed.  I'm not familiar with the Canadian system, but Forherself is, and I would take her (and her husband's) advice on how to navigate through the system.  I think you case cries out for getting another set of experienced eyes to review everything.

It would be wonderful to have the benefits of both the U.S. and Canadian health care systems without the burdens, but I don't see that happening anytime soon.  Canadians don't have to worry about all the billing issues we have here in the States.  I remember getting a bill for my hysterectomy hospital stay 1 1/2 years after surgery.  Went to the mailbox and got the bill telling me I could pay with a credit card.  I had two insurance companies, and neither one had paid in all that time because it was a complicated coordination of benefits issue.  I guess it was too much for the hospital billing department, so they gave up after a year and a half and dumped the problem back on me.  After sitting on the phone for hours with both insurers, I had to get my Congressman to intervene.  He was able to rattle the necessary cages and get the matter resolved within a few weeks. 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

I don't know how to post an active link, bu you can copy an paste this.  It talks about the way an endometrial biopsy should be done.  Have a look

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2015/05/endometrial-intraepithelial-neoplasia.   You could show it to your gyne or family doctor to show it is the accepted protocol.

 

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