has anyone experienced hair loss with endo?
by smartins1978, Apr 01, 2013
Hi everyone, I am in Toronto and was recently told that I have a cyst on each ovary.  The one on the left is over 6cm and b/c of this, i am having surgery on April 10th to remove both and whatever other endo they find.  I was nevr one to get cramps while on my period until I had my 2nd child 2 years ago.  I had mild cramps and thought nothing of it until this past January when I woke up with a horrible pain that lasted over and hour and then eventually subscrided. I have not had any pain since but am now anxious about all of this since this is all new to me.  
What I am wondering, is if anyone has experienced hair loss?  My hair never stopped falling out after my baby was born and I am finding that I have thinned out ALOT.... anyone else experience this?  apparently my iron level and thyroid are fine but i find it a bit of a coincidence that this all started right after I gave birth.  
Member Comments (3)
by tickedBlank, Apr 02, 2013
I am also in Toronto, well close enough Mississauga :)

I have experienced some hair loss but not clumps or anything. My hair always seems to come out more than normal when brushing.

It could be from child birth as well as I went down hill after my daughters birth and everything seemed to change for me.

Did you say you were having both ovaries removed or just the cysts?

Where are you having your surgery, who is doing it?

Do you have Endometriosis or do they think you have it?
by smartins1978, Apr 02, 2013
I am in Toronto and am seeing Dr. Lie who is apparently a very well known Doctor for endo.  I am going for surgery due to the size of the cyst on my left ovary.  Apparenlty anything over 5cm is usually removed.  
I went in to my Dr. because back in January i had a lot of pin during one of my periods.... all the other periods I had came with some cramps but nothing that i would need meds for.  I only started having cramps after having my second son 2 years ago.  This came with the hair loss as well that never really went away.  I thinned out so much on the top ....its brutal.  
How about you .... what is your experience with endo and when were you diagnosed? are you seeing a dr. in Toronto as well?

I had an ultrasound done and it showed a cust on each of my ovaries... then I had an MRI which showed the cysts and some endo in the back on my uterus.... I was told that the only real way to see how much endo I have is through the lap. surgery.   I am also seeing my endocrinologist to see if there is anything wrong with my thyroid since this hair loss is making me really feel down.... not knowing what is going on is really making me go crazy!
by tickedBlank, Apr 02, 2013
My experience with Endo has been hell and back and took 17 yrs to diagnose. I pretty much diagnosed myself after getting fed up finding Dr. Lie online with everyone's recommendations. Got the referral and within seconds he found the rectovaginal cyst that missed for years. He is wonderful but does push the macrobiotic diet as well as Tai chi and said his wife is healed because of them both. Truth is Endo doesn't go away it will continue to grow back and he wants to push the Tai chi because his wife teaches it. I am not saying it doesn't help because it would but I didn't like his approach. However he couldn't do my surgery anyways because I had previous bowel surgery so he sent me to Dr Leyland in Toronto who is now in Hamilton. They are both good and when it comes to Endo you are seeing the best we have so I am happy for you.

I was diagnosed at 27 yrs old but the pain started from my second period but got so much worse after the birth of my child. I was told I had a 10 cm complex cyst which turned out to be all my insides wrapped around my uterus.

Endometriosis can't be seen on any test only lap. There are indications of Endo such as fluid behind the cul de sac, endometriomas etc. A lap is necessary.

I am also about to see an Endocrinologist as well just waiting for my doctor to get me into the dr i want. I have such extreme fatigue to the point I can barely make it through the day.

If you want to know anything else please message me or even if you have time read my journals about my journey as I have been going through this for 23 yrs and just had another Endo surgery in Feb to remove more endo as well as scar tissue that was causing a bowel obstruction, however that doctor was out of the wasser pain management clinic at mt sinai and I didnt trust her but Dr leyland trained her so I agreed. I still have to go for my follow up to see why she she didn't remove the right ovary from the pelvic wall or my tubes and left ovary as that was the plan. All I could get fromher was that it was attached to my nerve and could have caused severe bleeding so they had to close up. So needless to say I was not happy when I woke up because it took three years to get this surgery because I couldn't go to the bathroom and was doing Enemas. Dr Leyland refused a second surgery and said I had neuropathic pain syndrome.

So yes I have been to hell and back and I hate this disease. Did you have any blood work done to see if you have PCOS? I think that also causes hair loss and a lot of people with Endo also have PCOS as well.