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Endometriosis Community
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15068146 tn?1438223148

Still painful and still no answers.

Ladies, I really need your help right now. I left my doctor's office in tears today and I have no idea what to do or where to go from here. I've posted my story on here before. It's long, but I can give you the shortened version:

I started on BCP back in 2009 when I was 18. I stayed on them for 6 years, but opted to go the Paragard route this past February since I was having periods every week and bad spotting while on BCP (I was on about 6-7 different brands and never found one I liked). Neither of my aunts could tolerate BCP either.

I had the Paragard inserted and was forewarned that it would be about 6 months before everything regulated and felt comfortable again. In May of this year, I started having severe abdominal pain. Got ultrasounded. They found a complex cyst on my right ovary and told me to wait 6-8 weeks for a follow up. The pain was still so bad, so they squeezed me in a few weeks later. Right cyst was gone, but another popped up on my left side. Luckily it was a normal functioning one.

The pain continued day in and day out. My periods were the absolute worst and continued to get more painful as more months went by. Finally on July 24, I went in for my very first lap surgery because of the ongoing pain. My doctor suspected endo because both of my aunts have it and I was showing signs and symptoms.

He told me they removed adhesions from the cul-de-sac, right pelvic wall (where that complex cyst was), and the right perivascular area. They removed my appendix and also my Paragard during surgery. I was to do a follow up in a week to see what the pathology report said. It came back negative for endo, so I asked him where the adhesions came from. I had no prior surgeries, no bowel infections, no appendicitis, no STI's. He told me it could be from fibroids. That didn't sound right because those would have shown up on an ultrasound and during surgery.
I have had 3 periods since my surgery. The first one was pain free, second was a little painful, and now this past one has been obnoxious. I've been in constant pain for over a week now (2 days before period, 5 days throughout my period, and now 3 days after my period). It's an aggravating deep pulling pain on my right side like before that goes down my leg and then sporadic crampy feelings throughout my lower pelvic region.

I finally got in with him again today to hopefully see if he could refer me to a specialist. He told me that my adhesions were now from my Paragard, not fibroids like before. He said the copper can cause inflammation in the pelvic area and cause adhesions to grow. I did a little research and the only thing I found was that adhesions and scar tissue had formed in people with the Paragard ONLY when it had perferated through the uterus lining. I only had mine for 5 months and it stayed in place the entire time. He wants to put me on Mirena. He says the cause of my pain is from painful periods and painful periods only. I questioned why I had been in pain for 3 months straight if it was only period pain, but got a roundabout answer. Before he left, I brought up that I was having pain during intercourse (my boyfriend of 7 years has been a saint during this entire fiasco in my life). He paused, started to answer, and then asked if it was just before surgery or after. I told him it was both before and after. He then asked again if I was sure I was still having pain post surgery during intercourse and I said yes. He started to answer, stopped, tried to come up with something, and then just blamed painful periods again.

I don't know what to do. Could it be I just have painful periods? Could it be that the Paragard caused adhesions? Could it be that I have been improperly diagnosed? I don't know. I need a specialist. I need a consultation. But without my OBGYN giving me a referral, how do I go about this? And if anyone has any input, thoughts, advise, I welcome it. I am lost, frustrated, and feeling a bit like a crazy person who making all of this up. Doctors are good at doing that to you.

My original post with my story is here: http://www.medhelp.org/posts/Endometriosis/Adhesions--but-no-endometriosis/show/2695606#post_13040647
3 Responses
136956 tn?1425609872
You can ask your GP to give you a referral for a second opinion. It is quite possible they missed the endo.

I can help by giving you some reputable Endo specialists if you are interested.

Let me know. If I don't respond please message me as I will get an alert for a message not a response from the post
15068146 tn?1438223148
I called my GP earlier and she wants me to come in on Wednesday to see if she can get me a referral. She really wants to help, which is a nice change.

I am in Illinois, close to Chicago. I'm not sure if you know any specialists out this way or not.
136956 tn?1425609872
Here are some top ones but you might have to travel. If you can this first one comes highly recommended.

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!

or this one

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.


I will also ask around as I am sure I have heard of someone in that area other than these two :)
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