Recently diagnosed

redskyharbor

so my doctor told me my scans have diagnosed pcos and that my current weight gain would have happened no matter what I did, it's just a case of losing it again through medication
However my symptoms aren't fully explained so they are going to operate to diagnose endometriosis as well so I can't have the medication yet

Anyone else in the same boat with both diagnoses?

KnitOrMiss

I don't have endometriosis, but yes, if you have PCOS and are insulin resistant, that first bit makes perfect sense to me...

There is a moderately interesting video on YouTube I watched yesterday that kind of gets into Insulin Resistance called "Butter Makes Your Pants Fall Off." Many of us with IR are recommended to go on High Fat, Low Carb, Moderate Protein Diets. https://youtu.be/h6aMN6NLOTQ

To me, this video did a very basic explanation of the whys... I hope you enjoy it. (You can start changing your eating even before surgery...)

redskyharbor

Wow i wouldn't have thought a high fat diet would have been any good but that was really interesting
I might have to look into this further, thank you so much

KnitOrMiss

Personally, I've lost 20 pounds and over 20 inches since January, my A1c is down, my fasting BG & insulin are down, my cholesterol is down, basically all my numbers improved.. It's definitely worth giving your body a chance to work this way to see if it helps you.

Dragonwolf

redskyharbor wrote: »

so my doctor told me my scans have diagnosed pcos and that my current weight gain would have happened no matter what I did, it's just a case of losing it again through medication
However my symptoms aren't fully explained so they are going to operate to diagnose endometriosis as well so I can't have the medication yet

Anyone else in the same boat with both diagnoses?

I see two red flags there:

1. "Current weight gain would have happened no matter what, and it's just a case of losing it through medication" uh...no.... you can control your PCOS without medication, though it does take some experimentation and knowledge.

2. The need for surgery to diagnose endometriosis. Did you have a pelvic exam and ultrasound, and did they suggest that it might be endometriosis? Laproscopy should be the last step in making a diagnosis and should be a confirmation when the ultrasound and/or pelvic exam suggest it might be. They shouldn't jump to it without the other two.

With those two things, I'd definitely consider a second opinion on treatment (and the endometriosis thing), if possible. At the very least, I'd ask for a review of any imaging you've had done before consenting to going under the knife or otherwise doing anything so invasive.

That said, PCOS does increase the risk of developing endometriosis, so it's not uncommon to see them both together, especially if it's not caught until later in life, or the PCOS is severe.

As for treatment, I'm like @KnitOrMiss in that I've found success with a low carb, high fat diet, as have several others in this group. Some people still need medication, but lifestyle changes usually go a long way toward solving the underlying issues instead of just masking the symptoms.

I've been working on a blog to compile such resources and tips and whatnot, a couple of the recent posts might interest you -- http://health.shaunagordon.com/

If you're interested in the low carb way of eating, I highly recommend joining the Low Carb group here on MFP -- http://community.myfitnesspal.com/en/group/394-low-carber-daily-forum-the-lcd-group -- it's got a ton of resources (be sure to read through the launchpad)

There are also other resources out there, such as:

http://pcosdiva.com/ (you don't have to buy her stuff or her plan, which she pushes kind of hard, but there is some good information on the site)

http://paleoforwomen.com/blog/ (again, don't feel pressured to buy her stuff, but still a bunch of good information on the website)

redskyharbor

My doctor said that I would have gained the weight regardless because I didn't know how bad the PCOS was and that it has affected how my body stores stuff, without knowledge of having and controlling the PCOS it has got out of hand and the medication is the main way of helping me lose weigh. It's just what my doctor said.

And yes I've had the exams and ultrasounds, that's how the PCOS was diagnosed, but my symptoms are not fully explained so they need to do a laproscopy to see if it is the suspected endometriosis. I highly doubt the NHS was throw expensive operations around unless they needed too with the cuts going on... Why would I question an operation my doctor thinks is necessary, i don't know.

The results were discussed with both a nurse, a doctor and the specialist gyno within the surgery, so I don't think getting a diagnosis through an op is a bad thing if that's what they thinks best, they are professionals after all...

leahraskie

I'd speak with your doctor about birth control- it needs to be a hormonal type so no copper IUD's, it should help with endometriosis and ovarian cysts. It also helps control your testosterone level which is probably elevated, may even out your mood and weight, clear up acne. Not too many downsides unless you smoke or are trying to have a baby.

I don't think there are really any medications specifically marketed towards treating PCOS and endometriosis besides surgical removal of the affected areas and even then there is a failure rate to decrease the pain associated with endometriosis. My GP said weight loss would help the symptoms decrease in severity, but other than that you can't do too much more unless you have insulin resistance associated and then medications can be used to help with that which may decrease weight.

redskyharbor

I'm currently on the Depo injection for birth control but I'm still getting the pain, which is, well, a pain

Yeah the medication was targeted at the insulin resistance which they said had caused the weight gain and might help lose some of it

Dragonwolf

redskyharbor wrote: »

Why would I question an operation my doctor thinks is necessary, i don't know.

Because doctors are humans, not gods. They make mistakes, just like the rest of us, and many are a bit too gung-ho about surgeries and invasive stuff. There are even a few who intentionally do shady things. Even for the most well-intentioned doctor, it's okay and good to take a step back and say "hey, I don't feel comfortable doing an invasive procedure just yet," and get a second opinion and/or more information and make sure that the less-invasive things were done. It's your body and your life, no one else is more responsible for its well-being than you, and part of that responsibility is being a self-advocate and yes, that means sometimes questioning a decision a doctor makes.

I wasn't there, so I can only go off what you've said here. Going on what you've said here, it raised red flags, so I pointed them out. If you're comfortable with proceeding with the laproscopy and feel the tests were done sufficiently, then by all means, go for it.

The results were discussed with both a nurse, a doctor and the specialist gyno within the surgery, so I don't think getting a diagnosis through an op is a bad thing if that's what they thinks best, they are professionals after all...

Of those three, the gyno is the only one I'd even begin to trust with such a decision, personally. Yes, they're all professionals, but medicine is a huge field. So huge that it's impossible for one person to know the intricacies of every aspect of it. It's unrealistic (and unfair to them) to expect them to know anything about a given disorder unless they actually specialize in it (and no, being a woman doesn't make a doctor more qualified on matters of the female reproductive system).

leahraskie wrote: »

I'd speak with your doctor about birth control- it needs to be a hormonal type so no copper IUD's, it should help with endometriosis and ovarian cysts. It also helps control your testosterone level which is probably elevated, may even out your mood and weight, clear up acne. Not too many downsides unless you smoke or are trying to have a baby.

I don't think there are really any medications specifically marketed towards treating PCOS and endometriosis besides surgical removal of the affected areas and even then there is a failure rate to decrease the pain associated with endometriosis. My GP said weight loss would help the symptoms decrease in severity, but other than that you can't do too much more unless you have insulin resistance associated and then medications can be used to help with that which may decrease weight.

I can't speak for the endometreosis part, so it's possible there are more benefits that I'm unaware of, but for the PCOS side, birth control is generally only a mask of the symptoms and can exacerbate the underlying problems (including, but not limited to estrogen dominance, and elevated insulin levels and insulin resistance). On the PCOS front, hormonal birth control at the very least isn't required for treatment.

Here are a couple resources that go into detail on the hormonal birth control debate:
http://pcosdiva.com/2010/09/5-reasons-the-pill-may-not-be-the-answer-to-pcos/
http://wellroundedmama.blogspot.com/2014/09/pcos-and-birth-control-pills-part-1.html (a good breakdown of the different types and considerations)

KnitOrMiss

Also, to give you a perspective on why to question a surgical recommendation, my gynecologist diagnosed me with pelvic organ prolapse and rectocele (basically my cervix, uterus, and bladder are descending into my vaginal canal, and the colon is pressing through the back vaginal wall). She recommended a full radical hysterectomy with bladder suspension, pelvic mesh in the front and back of my canal, and with the hysterectomy wanted to remove my cervix, uterus, and both ovaries and fallopian tubes. I was 35 at the time.

I had gone in because of the rectocele portion only. The rest was unknown to me at the time. I absolutely freaked out, because I was in a new relationship, and at that time I had not ruled out wanting more children, and that surgery is one on the news EVERY DAY about complications. I was also told that due to my young age, I'd likely have to repeat the surgery every ten years, that there were massive complications, and that in removing my cervix and modifying my canal, it was likely any "enjoyment" derived in sex would minimized or gone.

So, I went to a specialist (a urogynecologist if you're wondering what the specialty is) and asked for a second opinion. I was told that not only was surgery not indicated at this time (unless I was having pain or problems emptying my bladder, which I wasn't). To exaggerate the point, I was told that literally my insides could be hanging out of my body, and as long as I wasn't painful or leaving me unable to pee properly, there was never a reason that surgery was a MUST. I began using a device called a Pessary and have had decent success managing the condition.

Fast forward a few years - and just a couple months ago, I discovered that within my doctor's specialty clinic, there is a physical therapy office as well. I don't know if I missed the recommendation the first time or they didn't bring it up for whatever reason, but I'm now regaining my own muscle tone, strength, and control through physical therapy exercises. If I had had that radical surgery, I would not be able to gain my back quality of life in anywhere near the same capacity. I'm still working on it, and likely have the rest of this year before I get back to where I need to be for normalcy, but the fact is, it is possible.

All that being said, my sister has endometriosis, and I've never heard of a surgery required to confirm diagnosis. From the ultrasound, they can see the thickness of your uterine lining, and they can give you medication to force the shedding of the entire lining so that samples can be properly obtained. Any surgery you every have relating to your uterus can cause complications, up to and including infertility, permanently. So honestly, if you're ever wanting to consider having kids, I would get at least a second EXPERT opinion (a GP / regular doctor is not an expert in this condition), and be very reluctant to have any surgery, even exploratory without completely understanding all risks...

I wish you the best of luck in regaining whatever health is your goal.

leahraskie

Dragonwolf wrote: »

leahraskie wrote: »

I'd speak with your doctor about birth control- it needs to be a hormonal type so no copper IUD's, it should help with endometriosis and ovarian cysts. It also helps control your testosterone level which is probably elevated, may even out your mood and weight, clear up acne. Not too many downsides unless you smoke or are trying to have a baby.

I don't think there are really any medications specifically marketed towards treating PCOS and endometriosis besides surgical removal of the affected areas and even then there is a failure rate to decrease the pain associated with endometriosis. My GP said weight loss would help the symptoms decrease in severity, but other than that you can't do too much more unless you have insulin resistance associated and then medications can be used to help with that which may decrease weight.

I can't speak for the endometreosis part, so it's possible there are more benefits that I'm unaware of, but for the PCOS side, birth control is generally only a mask of the symptoms and can exacerbate the underlying problems (including, but not limited to estrogen dominance, and elevated insulin levels and insulin resistance). On the PCOS front, hormonal birth control at the very least isn't required for treatment.

Here are a couple resources that go into detail on the hormonal birth control debate:
http://pcosdiva.com/2010/09/5-reasons-the-pill-may-not-be-the-answer-to-pcos/
http://wellroundedmama.blogspot.com/2014/09/pcos-and-birth-control-pills-part-1.html (a good breakdown of the different types and considerations)

The birth control should shrink ovarian cysts, which is what clinically should be causing the symptoms, by decreasing the levels of testosterone or equalizing levels of estrogen and progesterone which would effectively treat the formation of new and old cysts. There are also progesterone only pills which could be used if you don't want to deal with estrogen dominance, the Depo shot is progesterone only. It doesn't mask anything....

For endometriosis, the lining is stabilized by the extra estrogen and progesterone. It doesn't treat it, it just lessens the symptoms really, surgery is the only way to get rid of it and that doesn't always work.

Also this research article sheds some light on the insulin resistance you brought up, I had never heard about this. The Depo shot only showed mild increases in insulin resistance, but birth control pills had no significant results. It's possible that these changes in insulin resistance were due outside factors; aka weight gain or changes in diet.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079533/

Dragonwolf

leahraskie wrote: »

Dragonwolf wrote: »

leahraskie wrote: »

I'd speak with your doctor about birth control- it needs to be a hormonal type so no copper IUD's, it should help with endometriosis and ovarian cysts. It also helps control your testosterone level which is probably elevated, may even out your mood and weight, clear up acne. Not too many downsides unless you smoke or are trying to have a baby.

I don't think there are really any medications specifically marketed towards treating PCOS and endometriosis besides surgical removal of the affected areas and even then there is a failure rate to decrease the pain associated with endometriosis. My GP said weight loss would help the symptoms decrease in severity, but other than that you can't do too much more unless you have insulin resistance associated and then medications can be used to help with that which may decrease weight.

I can't speak for the endometreosis part, so it's possible there are more benefits that I'm unaware of, but for the PCOS side, birth control is generally only a mask of the symptoms and can exacerbate the underlying problems (including, but not limited to estrogen dominance, and elevated insulin levels and insulin resistance). On the PCOS front, hormonal birth control at the very least isn't required for treatment.

Here are a couple resources that go into detail on the hormonal birth control debate:
http://pcosdiva.com/2010/09/5-reasons-the-pill-may-not-be-the-answer-to-pcos/
http://wellroundedmama.blogspot.com/2014/09/pcos-and-birth-control-pills-part-1.html (a good breakdown of the different types and considerations)

The birth control should shrink ovarian cysts, which is what clinically should be causing the symptoms, by decreasing the levels of testosterone or equalizing levels of estrogen and progesterone which would effectively treat the formation of new and old cysts. There are also progesterone only pills which could be used if you don't want to deal with estrogen dominance, the Depo shot is progesterone only. It doesn't mask anything....

For endometriosis, the lining is stabilized by the extra estrogen and progesterone. It doesn't treat it, it just lessens the symptoms really, surgery is the only way to get rid of it and that doesn't always work.

Also this research article sheds some light on the insulin resistance you brought up, I had never heard about this. The Depo shot only showed mild increases in insulin resistance, but birth control pills had no significant results. It's possible that these changes in insulin resistance were due outside factors; aka weight gain or changes in diet.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079533/

Cysts aren't even required for PCOS, so you can't shrink cysts that aren't there (but you also can't know you have cysts without an ultrasound). Unfortunately, PCOS isn't as simple as cysts on ovaries making them overproduce (there are a few women in this forum who don't even have ovaries anymore), nor is it just an imbalance of estrogen and progesterone, but rather a systemic endocrine issue. I'm a big proponent of testing to find the root cause, since there appear to be several potential causes.

I'd be wary of Depo. I was on it for a year, and suspect it was a large part of why I gained 100lbs that year. It's also known for elevating cortisol levels, which can also screw with the other hormones. Like all hormonal birth controls, though, people respond differently to different kinds, so while it may be my bane, it may be someone else's savior. =/

More generally, though, I wouldn't go on any birth control for the purpose of handling PCOS without first getting blood tests. Not every woman is deficient in estrogen, and external estrogen can make matters worse. You can't know what your levels are without tests. This is my main beef with birth control being the first line treatment for PCOS. 9 times out of 10, it's prescribed blindly, without much thought to either the make-up of the birth control or the woman's actual hormone levels.

fattybattyy

I was diagnosed with PCOS a week ago. Like Dragonwolf said- it CAN be controlled without surgery/medication. It just takes diet changes. My doctor, research and nutritionist have all said low-carb is the best option for PCOS. Taking out carbs, means more fat...etc.

The only thing I would definitely get a second opinion on is the birth control. My doctor who specializes in female biology said (and like Dragonwolf said again, doctors make mistakes so who knows) birth control in pill form is going to do the best in helping with weight loss, regulating PCOS (and symptoms) and hormones.

Dragonwolf

@leahraskie On a side note, I'm really not trying to be argumentative, so I apologize if I came off that way.