Still painful and still no answers.

[jessicaanne23]

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 about my story is here: healthunlocked.com/endometr...

[applebird]

Go back to your gp, say you aren't happy with the gynae and explain how inadequate the care was, ask for a referral to an endometriosis specialist, preferably at a specialist centre bsge.org.uk/ec-BSGE-accredi...

- You can get adhesions from endometriosis! Best to check things out with a specialist x

[jessicaanne23 in reply to applebird]

Great! Thanks. I just called my GP and she's going to get back to me shortly on what she can do.

[lisatf2004]

I have same pains as your experiencing and its Defo endometriosis on my part. I contacted a specialist myself and was also told it would be a gyny to refer me I spoke to the Secretary and informed her of the troubles I had with my gyny she said she would pass my email to the specialist I am willing to pay for consultation. I have doctors tomorrow so will ask if they can do a referral for me and take it from there I Defo would prefer specialist advice x

[jessicaanne23 in reply to lisatf2004]

Thank you for the info! I'm definitely going to try my hardest to get in with a specialist even if my OBGYN or GP won't do referrals. I don't mind paying for a consultation, as long as I get some answers.

[KatieD]

Goodness, it sounds as if that doctor was having to improvise a bit! I was in a similar situation. Here's the short version, lol. Had surgery, endo removed, still in pain but Dr said I was clear of endo now so it couldn't be that. Sex was v painful and I couldn't get a tampon in without pain. Saw 3 other gynaes who said it wasn't endo. Finally found my wonderful endo specialist and he agreed to another lap. He found a huge nodule of endo scar tissue behind my cervix. (The other surgeon basically hadn't looked that far.) He was able to remove most of it and eventually pain improved. Endo in that area (pouch of Douglas/recto vaginal endo) is common and can be difficult for surgeons to access. Definitely see a specialist! Good luck!

[jessicaanne23 in reply to KatieD]

Thank you very much! I'm happy to hear that they found out what was causing your pain. Hopefully things are better for you now. That sounds painful!

[noname1971]

Dearie... we're in a similar boat. Could strangle the doc I just saw. I'm in Los Angeles California (USA) and cried all the way back. Appointment time? 12 minutes and the same scoot around dialogue. Trip time while in severe pain and driving myself through heavy traffic? 1 hour and 45 minutes. This doc is insisting in another round of Lupton injections. I don't want to do that again. Why couldn't he speak to me as one human to another. I didn't see any title other than doctor. Didn't realize I had an appointment with a demigod who really didn't want to answer questions. I've heard about the copper before.....some of my friends experienced the same after it was first approved in the states. Not always punctured uterus. Scar tissue is what seemed to cause the most trouble. Has anyone found a way to successfully communicate with docs? You're in my thoughts....I felt foolish for crying. .thank you for letting me know I'm not the only intelligent capable woman who was pushed to tears.

[jessicaanne23 in reply to noname1971]

Thank you. I hope everything gets figured out on your end. I'm tired of doctors pushing aside our issues and our pain. No matter where it originates from, they should be able to do something about it themselves or point us to someone who can.