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Endometriosis

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Anyone here had or having endometriosis?

Can you share your story here so that we can help each other and let more people understand about endometriosis?

I'll share my story first:

How it started:

I had severe abdominal pain during my menses. I would usually take 1 pain killer on the first day of my period and the pain will go away.

Slowly, the pain continue until second day of my period till the whole cycle of my period. I need to take pain killer very often, sometimes everyday during my period.

By now, I've already visited quite a lot of doctor and they confirmed seeing cyst in both my ovaries. They suggest that I TTC right away and I was prescribed Clomid.

I took it for 2 cycles and failed.

And then, slowly, the pain started days before my period... and slowly it develop until I needed to take pain killer every 4 hrs everyday as the pain will be with me 24/7.

By this time, I was unable to stand the pain anymore as my endo has develop until stage 4. I went for laparotomy in 2011.

After surgery, I still get very painful period and I still feel pain just like before the surgery. I took Lucrin injection for 9 mths.

I went to another Dr and he confirmed I have recurrent endometriosis. I went for 2nd laparotomy in 2012 and 2 months of Zoladex.

Now, 2013, ultrasound scan shows that I am having another recurrent endometriosis.

What I have learned:

1. Never ever take chinese medication like Dong Quai or Pak Zhen.

2. I read from a blog that taking EPO is good for endometriosis. I religiously and stupidly took 1000mg of EPO everyday for 2 weeks and during my most recent scan, Dr. saw cyst starting to form.

I just did my scan 2 weeks ago and it was very nice. Just 2 weeks later when I go for another scan, there are cyst growing inside already !

I told Dr that I've just started on EPO. He said never ever take EPO !! Ladies with endo, please stop your EPO immediately.

Can only think of this right now.. I'll add in later.



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This is very informative. I'm not experiencing endometriosis but still I want to learn about this. Keep posting.

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HI Pink,

Endometriosis, is not cause by taking chinese herbal neither EPO. I'm a naturopath/ nutritional therapist here.

Its all about your diet and lifestyle. Do you know that eating chicken could cause excess toxics hormone in your body? and drinking from plastic bottles too? there are so many chemicals around us.

You happen to be one of the unfortunate ones with sensitive body. Going to the doctor for surgery its not going to help unless you work on your diet and health. My client, got recurrent of cyst but didnt go for surgery and improve on her diet. The cyst went away. she regretted doing the surgery for the first cyst.

I've studied EPO and women's health, fertility, etc. You need to know the root cause before making conclusion that pak zhen or EPO causes endometriosis. Which doctors are not trained in complementary therapy. Doctors only treat symptoms. They do not offer prevention treatment unlike naturopath. Please understand, im not against doctors, as i respect them. But their job is to treat and not finding the root cause! Are you aware that traditional chinese medicine and ayuverda medicine has been around much longer than conventional medicine? Just because they lack of funding in research and not much money making like drugs, they are being seen as causing harm to human. I appreciate the wisdom our fore father developed ages ago.

Well, In order to regulate your cycles and improve endometriosis, you need to work hard on your diet.

Google, naturopath, Understand who do we do.

Love,

Alyssa ng

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Hi Pink

I started endometriosis when I was 19 in yr 2001. I hv gone through 4 times surgery and the last was in yr 2007 which I got to remove my left ovary. It also cause blockage at my right fallopian tube. According to Dr, my ovaries are too sensitive. He also told that I'm 100% can't get to pregnant naturally. Anyway, I keep trying to conceive but end up with disappointed... I did try IVF too but it's failed due to my poor quality ovum. Finally I accept the truth and we got an adoption in yr 2012. But, as a women, I'm really hope can be like the others women which can go through the full duration of pregnancy. Dr advice me that the only way is to get an ovum donor or frozen embryo donor. But it's really not easy to get... The only thing I can do is pray hard for miracle happen. Currently my right ovary is still having the cyst. But Dr said unless remove everything or else jz wait and monitor frequently. I'm having a quarterly check up to monitor the cyst. If it's getting bigger, Dr will advice to take a CA 125 blood test. It's to confirm the status of the cyst whether it's become any cancerous.

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Hi Regine, Pink

You had a tough journey TTC. Many surgery, ivf and finally adoption and still continue with cyst.

I was also diagnosed to have endometriosis 8 year ago and my pain was tolerable with medication. My tubes and hb sample were ok. I TTC and my doctor told me I had a chocolate cyst 3 cm on both sides and they needed to remove. After surgery I still couldn't conceive. After 2 years, I was told my ovary reserve is very low and was told to try one cycle of IVF and should it failed to go for egg donor.

I learned two things:

1. endometriosis is a continous and progressive disease. So the ovary can only get worse with time. If any of you have endometriosis and wants to have a baby, its best to start early before it destroy your whole ovary.

2. Don't do surgery unless really necessary because endometriosis will destroy part of ovary and doctor will also remove part of the ovary during surgery and you will be left with a little ovary.

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Hi Kancil,
Agree with what u said.
3 yrs ago I had severe pain during menses. Doc told me I have endometrioisis. 2 yr passed n I have a cyst 3cm on my r side. I tried to have a baby for the last 3 yrs because my doc advised me to hurried up and plan my family. I was deciding btw straight ivf or surgery then ivf. Different doc gave me different advices.
I choose to do ivf and not go for surgery. Thanks for ur comments too. Im blessed. Now im pregnant 2 months.

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Hi Kancil,

Agree with what u said.

3 yrs ago I had severe pain during menses. Doc told me I have endometrioisis. 2 yr passed n I have a cyst 3cm on my r side. I tried to have a baby for the last 3 yrs because my doc advised me to hurried up and plan my family. I was deciding btw straight ivf or surgery then ivf. Different doc gave me different advices.

I choose to do ivf and not go for surgery. Thanks for ur comments too. Im blessed. Now im pregnant 2 months.

Hi Jancan,

Congrat! Happy for u. I m happy to share. May I know how many eggs count u have when u start your ivf? Do u have extra embyo to freeze? How big is your cyst?

I heard the cyst will increase in size during stimulation. Thats added reason given to me during counselling.

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Hi Kancil,

Agree with what u said.

3 yrs ago I had severe pain during menses. Doc told me I have endometrioisis. 2 yr passed n I have a cyst 3cm on my r side. I tried to have a baby for the last 3 yrs because my doc advised me to hurried up and plan my family. I was deciding btw straight ivf or surgery then ivf. Different doc gave me different advices.

I choose to do ivf and not go for surgery. Thanks for ur comments too. Im blessed. Now im pregnant 2 months.

Hi Jancan,

Congrat! Happy for u. I m happy to share. May I know how many eggs count u have when u start your ivf? Do u have extra embyo to freeze? How big is your cyst?

I heard the cyst will increase in size during stimulation. Thats added reason given to me during counselling.

Hi Kancil,

U mean the number of follicles? I had 12 folli before opu. Doctor collected 8 eggs and 7 fetrilized. 3 was transferred durng ET and I still have 3 frozen. Doctor said my cyst din increase in size during each checkup. So I guess it remain at 3 cm. Doc sucked out the cyst during upo. I din expect to be successful during 1st ivf. Im 36 and considered lucky to have that many eggs. If I had chose surgery, my ovary will be half cut away and eggs will be half gone. Very Thankful that I din go for surgery.

Are u planning for ivf?

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Hi Kancil,

Agree with what u said.

3 yrs ago I had severe pain during menses. Doc told me I have endometrioisis. 2 yr passed n I have a cyst 3cm on my r side. I tried to have a baby for the last 3 yrs because my doc advised me to hurried up and plan my family. I was deciding btw straight ivf or surgery then ivf. Different doc gave me different advices.

I choose to do ivf and not go for surgery. Thanks for ur comments too. Im blessed. Now im pregnant 2 months.

Hi Jancan,

Congrat! Happy for u. I m happy to share. May I know how many eggs count u have when u start your ivf? Do u have extra embyo to freeze? How big is your cyst?

I heard the cyst will increase in size during stimulation. Thats added reason given to me during counselling.

Hi Kancil,

U mean the number of follicles? I had 12 folli before opu. Doctor collected 8 eggs and 7 fetrilized. 3 was transferred durng ET and I still have 3 frozen. Doctor said my cyst din increase in size during each checkup. So I guess it remain at 3 cm. Doc sucked out the cyst during upo. I din expect to be successful during 1st ivf. Im 36 and considered lucky to have that many eggs. If I had chose surgery, my ovary will be half cut away and eggs will be half gone. Very Thankful that I din go for surgery.

Are u planning for ivf?

Hi Jancan,

U have a lot of eggs. And had extra for frozen emb too. I m happy 4 u.

I did ivf 2 mth ago and manage to have 3 folliles on my right side. On my left side where I had a cyst. ther was no follicle. Only one eggs obtained, means 2 were empty. Transferred only one embryo ...sad...BFN. I was told by doc that ther was no eggs on the left bcos endometriosis cyst had damaged my left ovary but I still think that part of my left ovary would still be producing eggs if i had not gone 4 surgery. Doc advised to used donor eggs. Hb cannot accept.

.... hope for miracle

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