Go Back   NeuroTalk Support Groups > >

Women's Health For women's health topics.

Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)

Reply
 
Thread Tools Display Modes
Old 04-30-2014, 12:01 AM   #1
ladyinpain
Junior Member
 
Join Date: Apr 2014
Location: Texas
Posts: 10
My Mood: Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)
Unhappy Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)

I am in so much pain. Last week I was diagnosed with PCOS, and I will need a hysterectomy. Just what I want... a tricky disease and more surgery. I have severe pain in my ovaries from the cysts to go along with my chronic pain. SMH. Every day I am curled up in my bed with pain that's like early contractions. I can't have surgery until I complete my six months of treatment on Xarelto (blood thinner) from the pulmonary embolism I got in November. I have about six weeks left on the anticoagulants, which are causing me to lose a lot of blood everyday. Right now my hemoglobin is 10, and if it drops below that, I will need another blood transfusion. I had two units of blood and a unit of iron in November when I was hospitalized. I'd like to know your story on how you personally deal with this disease.

Thanks!
ladyinpain is offline   Reply With Quote
"Thanks for this!" says:
eva5667faliure (05-02-2014), Lara (05-05-2014)
Old 05-02-2014, 01:17 AM   #2
eva5667faliure
Grand Magnate
 
eva5667faliure's Avatar
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,511
My Mood: Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)
Default So Sorry

Dear friend

I am sorry that you too
are enduring indescribable
pain
As a woman we suffer
every month with a period
I understand what kind of cyst
you speak of
It was in my changes still endure
monthly surges as it is still fresh
I will be seeing my oncologist Monday
And simply because my breast cancer
is hormonally driven there are times
my mini pad will have a pink hue to it
is concerning to me

Having to remove all your female organs
if I may ask
What will the hormones that will be given as treatment
I also became cystic durning my changes
I needed two D/C a year apart from each other
There also was some endometriosis with the last D/C
I will be looking out for any progress as you go through
this
Prayers for you at this hard time in your life
Me
__________________
someone who cares
eva
eva5667faliure is offline   Reply With Quote
"Thanks for this!" says:
Lara (05-05-2014)
Old 05-05-2014, 05:22 PM   #3
Snoopy
Magnate
 
Snoopy's Avatar
 
Join Date: Sep 2006
Posts: 2,246
Default

Hello ladyinpain,

There is a pain that can happen for many women during mid-cycle (mid-cycle pain) which is called Mittelschmerz and can happen with or without PCOS. The pain will typically last approximately 24 hours but each woman is different.
The pain caused by Mittelschmerz can be quite extreme.

Information about Mittelschmerz:
http://www.mayoclinic.org/diseases-c...n/con-20025507

Quote:
Last week I was diagnosed with PCOS, and I will need a hysterectomy
I am not sure why you need to have a hysterectomy for Poly Cystic Ovarian Syndrome (PCOS) This is not usually typical.

Information about PCOS:
https://www.womenshealth.gov/publica...-syndrome.html

I have had PCOS since my early teens which is usually when PCOS first appears. I am now 53 years old and an ultrasound still shows the evidence of PCOS. I have also experienced Mittelschmerz since I started my cycles many years ago.

I have not had surgery for PCOS and would consider a second opinion before having a hysterectomy for this Syndrome.

Take care.
__________________
Dx RRMS 1984
Snoopy is offline   Reply With Quote
"Thanks for this!" says:
eva5667faliure (05-08-2014), Lara (05-05-2014)
Old 05-05-2014, 06:55 PM   #4
Lara
Legendary
 
Lara's Avatar
 
Join Date: Sep 2006
Location: Northern Rivers
Posts: 10,267
Default

Hi ladyinpain,
I'm really sorry you're in so much pain.

I have to agree with Snoopy regarding getting a second opinion.

My daughter was diagnosed with PCOS by an Endocrinologist when quite young.

She actually has only ever had one cyst and he did say that she was somewhat atypical in her presentation generally but he also explained to her that the term PCOS is a bit of a misnomer.

PCOS is a syndrome which means there are a number of signs or symptoms that are common in a particular condition.

As far as I know, people can have polycystic ovaries without having PCOS, due to other causes. e.g. do you have endometriosis?

Have you been checked by an Endocrinologist at all?
Has your doctor ever checked your Insulin and Androgen levels?

Do you have any of the other signs or symptoms of PCOS as presented in the fact sheet that Snoopy left?
Lara is offline   Reply With Quote
"Thanks for this!" says:
eva5667faliure (05-08-2014), Snoopy (05-06-2014)
Old 05-05-2014, 07:19 PM   #5
ladyinpain
Junior Member
 
Join Date: Apr 2014
Location: Texas
Posts: 10
My Mood: Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)
Default

Quote:
Originally Posted by Lara View Post
Hi ladyinpain,
I'm really sorry you're in so much pain.

I have to agree with Snoopy regarding getting a second opinion.

My daughter was diagnosed with PCOS by an Endocrinologist when quite young.

She actually has only ever had one cyst and he did say that she was somewhat atypical in her presentation generally but he also explained to her that the term PCOS is a bit of a misnomer.

PCOS is a syndrome which means there are a number of signs or symptoms that are common in a particular condition.

As far as I know, people can have polycystic ovaries without having PCOS, due to other causes. e.g. do you have endometriosis?

Have you been checked by an Endocrinologist at all?
Has your doctor ever checked your Insulin and Androgen levels?

Do you have any of the other signs or symptoms of PCOS as presented in the fact sheet that Snoopy left?
Sorry if I left some information out. This is the third opinion, and I have nonstop bleeding and small endometrial problems. The cysts also continue to get larger and hurt more. I don't plan on having any more kids. I had the Essure procedure done in 2011. The females in my family have a history of endometriosis. These are a few reasons why the GYNs I saw opted for a hysterectomy. I will discuss this topic again with my Dr. once I finish the blood thinners at the end of the month.
ladyinpain is offline   Reply With Quote
Old 05-06-2014, 08:45 AM   #6
St George 2013
Member
 
Join Date: Sep 2013
Location: Georgia
Posts: 905
My Mood: Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)
Default Good Morning :)

Just wanted to let you know my daughter had a hysterectomy on April 28th due to PCOS and the other things that seem to go along with it. She's only 29 and was dx'd as a teenager. She's never had children and thankfully didn't really want any so the mental aspects of this have been less for her than someone that wanted children. Of course it's diff when you say you don't want children and someone tells you that you 'can't' have children.

We won't find out the path info until May 16th.

Good luck to you and please keep us posted.

Debi from Georgia
St George 2013 is offline   Reply With Quote
Old 05-06-2014, 09:15 AM   #7
Snoopy
Magnate
 
Snoopy's Avatar
 
Join Date: Sep 2006
Posts: 2,246
Default

It is important to note there are different types of ovarian cysts (not all cysts mean PCOS) and further ready may help in understanding:

http://www.womenshealth.gov/publicat...ian-cysts.html

ladyinpain, I am sorry for your pain and I hope all is better soon.

What you are describing does not sound anything like Polycystic Ovarian Syndrome (PCOS). With this syndrome irregular periods are normal, missing anywhere from one to several months.

Infertility problems is common as is hair growth on the chest, face, neck, as well as other symptoms. As stated earlier these symptoms start in the teen years. The cysts associated with PCOS are small but numerous and these cysts do not get larger.

Please speak with your Dr. for a better understanding of your female health problems.

Surgery is NOT considered as a treatment for Polycystic Ovarian Syndrome. Surgery could be a recommendation for other types Ovarian Cysts.
__________________
Dx RRMS 1984
Snoopy is offline   Reply With Quote
"Thanks for this!" says:
Lara (05-06-2014)
Old 05-06-2014, 04:24 PM   #8
Lara
Legendary
 
Lara's Avatar
 
Join Date: Sep 2006
Location: Northern Rivers
Posts: 10,267
Confused

I'm really sorry, but I'm not understanding...

Even if the ovaries are removed (Oophorectomy) then a person will still have some of the symptoms of
Polycystic Ovarian Syndrome. PCOS is not a disease, as such, of the ovaries or the uterus.

I don't understand how having the uterus removed (Hysterectomy) would affect the symptoms of PCOS,
so am wondering Debi and ladyinpain, how the doctors have managed or are suggesting to manage any other symptoms
that may be present
e.g. do you ladyinpain, or in Debi's case, does your daughter have hormone imbalances and Insulin Resistance etc.?

Androgen is not only made in the ovaries, it's also made in the adrenal glands and fat cells I think (?).

Insulin Resistance will not be cured by removal of the uterus. It also won't be cured by removal of the ovaries.

PCOS type cysts are the result of many factors.

I really wish the powers-that-be would update and change the name of this condition so that the description was not so cyst-related.

Lara is offline   Reply With Quote
"Thanks for this!" says:
DejaVu (08-21-2015), Snoopy (05-06-2014)
Old 05-06-2014, 06:25 PM   #9
Lara
Legendary
 
Lara's Avatar
 
Join Date: Sep 2006
Location: Northern Rivers
Posts: 10,267
Default

I ran out of time earlier, but wanted to add...

We have a
Diabetes / Insulin Resistance / Metabolic Syndrome Forum
here at NeuroTalk.

There are many older posts regarding PCOS on there as it relates to Insulin Resistance.

There's also
Search Forums
which enables us to search the whole of NT for specific words.
There's also a separate Search feature on each Health Topic that allows us to search just that Forum.

I also wanted to say that my daughter's shown a lot of improvement since being diagnosed with PCOS.
After diagnosis she was immediately prescribed Metformin and one of the contraceptive pills that was chosen
to suit her specific oestrogen and other hormone needs.

My daughter is actually very slight in build but was still told to immediately lose 5 kilograms and to increase her exercize.

She has been able to get off her Metformin totally and her last fasting glucose levels were good.
She changed her diet (even going gluten free for a long time), increased exercize dramatically,
lost some weight (even though she didn't look as if she needed to) and her cholesterol levels were better as well.

However, having said that, the least little increase in weight that she has noticeably changes everything.

I know it's a very individualized condition and there is still so much to learn about why it happens,
but I have seen with my own eyes how important that diet and exercize are for my daughter.

She had even gone off her 'pill' for some months, but symptoms returned.
So what she has learned is to maintain a healthy diet, get lots and lots of exercize and
for now to continue with her hormone pill.

That ... and regular check-ups with the doc..

Don't forget ladyinpain to check out the other forum if you have Insulin Resistance.
Lots of information there.
Lara is offline   Reply With Quote
"Thanks for this!" says:
Snoopy (05-11-2014)
Old 05-06-2014, 08:24 PM   #10
ladyinpain
Junior Member
 
Join Date: Apr 2014
Location: Texas
Posts: 10
My Mood: Help! Just diagnosed with Polycystic Ovarian Syndrome (PCOS)
Default

I don't believe the diagnosis either Snoopy, but when I go back to speak with the GYN I will have a list of questions. I was told I had PCOS last year and I got a second opinion who said that I didn't have it. This is a third GYN saying that I have PCOS. I had irregular cycles for about a year. Now I have the cysts, discoloration on my neck, weight gain (which could be from other health problems) and constant pain and bleeding. Something is going on; I just don't think it's PCOS. I'm going to ask to have more tests done before I go under the knife again. I've had seven surgeries and I'm not really looking forward to an eighth.
ladyinpain is offline   Reply With Quote
"Thanks for this!" says:
Snoopy (05-11-2014)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Diagnosed with stiff man syndrome? debbiehub Reflex Sympathetic Dystrophy (RSD and CRPS) 25 08-31-2017 09:39 PM


All times are GMT -5. The time now is 07:50 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy