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Endometriosis Community
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Looking for advice/support

Good morning all!

A little back ground...I am 28 years old. I have struggled with painful heavy periods since I was 14 years old. I was officially diagnosed with Endometrosis in 2008 after a needed to have a cyst from my ovary surgically removed. Then in 2012 I had surgery to remove a fibroid from my uterus. Things were better for a while after that.

In February of this year I went off my birth control for several reasons. I didn't like the side effects and at some point we are going to try for a baby. We have stopped trying to prevent pregnancy but are not actively trying--if that makes any sense. I am a little concerned that this hasn't resulted in pregnancy yet....

But my larger concern is the symptoms I am having now and whether they can be Endo related. So I have had nausea on and off for a while. Usually happened at night and was manageable. The last two months have not been manageable. I went to my PCP who prescribed Zofran (helps some) and ran tests on my gallbladder. With the nausea at times comes dizziness and diarrhea as well. Those happen less frequently. The nausea gets worse the week leading to my period. Last month I could barely get out of bed that week as I felt so sick. I thought maybe it was pregnancy but that test was negative.

I also have back pain, in my lower back. I remember having this prior to one of my surgeries and it's back. I am convinced it's related but my gyno said it's not possible and my PCP did an X-ray saying I have "pre-arthritis" causing the pain.

And the last but weirdest symptom. I have problems with my eyes and my nose right before my period. My nose tends to bleed and feel like there are sores and my eyes feel like something is in them. I've read about endo outside the abdomen area---but maybe I am overthinking things.

So basically I would love to hear what others have experienced and whether I am overthinking all of these symptoms or if there could be a correlation. Also would love to know what you ladies do to cope with symptoms.

Thanks!
1 Responses
136956 tn?1425606272
From what you have posted it sounds to me like Endometriosis. I also had the nausea in a bad way for years before being diagnosed.

The reason I also think that it is Endo is because most likely your surgery was not done by an Endo specialist and they most likely did ablation (laser removal) not excision (cut out) the difference is night and day and excision is the gold standard of treatment. It takes the disease right from the root where laser only gets the surface.

I would suggest seeing an Endo specialist. If you let me know where you are I can guide you to the best one in your area. Going this route will also help if there is some sort of blockage from scar tissue from your previous surgery preventing pregnancy. Many women after having proper surgery with a specialist have gotten pregnant months after.

I would document the bleeding from your nose during your cycle, although rare it could be endo in a very rare part of your body. Not saying it is at all but sometimes cyclic nose bleeding is common in the endo community but almost 99.99999% of the time is not endo related. The sores could be caused by hormones. I would not think more about the sores or nose bleeds being endo but that is just my opinion.

I know this may sound really weird and random but Endo causes inflammation and herpes can cause it as well. I wonder if it is possible if that is what it is. Sometimes when the immune system is down we are more prone to activating different things in our bodies like cold sores etc. Have you ever had a cold sore before not near your eyes or nose but on your mouth? I say this because I knew a guy who did and over the years it spread to his eyes and nose. I am not saying it is this but throwing it out there because you really never know. I would get cold sores like clock work during my cycle and since my hysterectomy nothing at all. I am not on HRT so its possible for me my hormones were causing it to flare.

Another common co-morbid disease that a lot of women with endo have is Sjogren's syndrome. Look that up and see if you have those symptoms as that syndrome usually effects the eyes, mouth and nose.
2 Comments
Thank you for your response!

I am in Northern Illinois. My first surgery was an ablation and was not done by an endo specialist. My second surgery was done by a specialist but I think they did an ablation as well. If you know any specialists in this area I would love to know who they are.

It's comforting to know the nausea could be related. I am seeing a GI doctor tomorrow but my gut tells me that it is not GI related.

As far as the sores, I have not had a cold sore but I will continue to watch and see if that could be it.

Thank you for your comment!!
There is one that is in Illinois not sure if it was the one you saw but here is the information

Dr. Sherman Silber
beschrijving
The Infertility Center of St. Louis, St. Luke’s Hospital (http://www.infertile.com/closlook/biograph.htm),
224 S. Woods Mill Road, Suite 730,
St. Louis, Missouri 63017, USA
T: (314) 576-1400

*Dr. Silber is included on the map for his surgery for the treatment of adenomyosis. He is one of the only surgeons worldwide to offer the Osada Procedure, an alternative to hysterectomy in women with adenomyosis who wish to preserve their fertility.

Specialisation: FERT
Bowl/urinary tract surgery: Does own urinary tract work.

However if you can get to Milwaukee, Wisconsin.

This guy is one of the best in the world

Dr. Charles Koh

Reproductive Speciality Center (http://www.reproductivecenter.com/contact.html),
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: (414) 289-9668
E: ***@****
*Dr. Koh asks that prospective patients get in touch with him directly by email. He also operates in Singapore and is planning to start a clinic in Hong Kong.

*Dr. Koh is recommended by Dr. Redwine as the most skilled endometriosis surgeon in the USA.

Dr. Koh:
Specialisation: GYN only
Bowl/urinary tract surgery: Does all urinary tract and bowel work. Ubersurgeon!  
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