at my wit's end with abdominal pain

March 29, 2018 5:11 AM

For the last 4 years I have lower abdominal pain on and off in the second half of my menstrual cycle. So far doctors can't find anything wrong and we can't come up with a successful treatment. YANMD, but can you help me figure out what next steps to take, or whether I should be seeing some other kind of doctor?

I'm 35, have never been pregnant, and don't have any STDs. For the last 4 years, I've been getting radiating pains from approximately the area of my appendix, every month in the second half of my menstrual cycle. They start a day or two after ovulation (according to my gyno), 12 days before my period starts, and approximately correlate with the part of the cycle where progesterone is highest. The pains come and go over the course of a week to 10 days, but when they are present are severe enough to wake me up from sleep, and keep me from concentrating if I'm working. Two separate gynecologists and a gastroenterologist have done ultrasounds and found no physical causes for the pain (so ovarian cysts are ruled out, for example); one suggested that the fluids released after ovulation are irritating my intestines, but there's no actual evidence for this, and her suggested treatment (bland diet) didn't help. It's still not even clear to me whether the real problem is gynecological or intestinal. I don't have any other symptoms of either type, e.g. heavy bleeding, gas, diarrhea, or constipation. I just had a full blood panel and everything came up normal; we also did the blood test for celiac disease and it came back negative. I am currently medicated for depression, but the symptoms started long before I started taking an antidepressant, and have not changed since then. I am otherwise healthy: at a healthy weight, eat a reasonably healthy diet, though I could probably stand to cut back on the chocolate, and get plenty of exercise by bike commuting.

Treatments I've tried:
- OTC painkillers: no effect
- heat: no effect
- soft/bland diet (e.g. yogurt, bananas, rice): no effect
- agnus castus and black cohosh (natural remedies suggested by first gynocologist): no effect
- metformin (for hypothetical ovarian cysts): no effect
- hormonal birth control (NuvaRing, progesterone-only pill): succeeded in stopping the pain, but side effects of both types (crippling depression, suicidal thoughts, heavier and more painful periods) were unbearable

Basically I hoped the hormonal birth control was going to be my silver bullet by stopping ovulation, but since I can't live with the side effects I feel like I'm back at square one. Has anyone ever had similar symptoms and figured out the cause? Should I be talking to a different kind of doctor - perhaps an endocrinologist? Should I try an elimination diet? I'm open to any and all ideas.

posted by anonymous to Health & Fitness (18 answers total)

There are many different formulations of the pill. I'd try a few others before giving up on that route. A competent gyno should be well versed in those, but possibly an endocrinologist could offer insight.
posted by Dashy at 5:23 AM on March 29, 2018 [3 favorites]

IANAD but I did suffer for years with pelvic adhesions which got MUCH WORSE during the same time you mention. If you have any it is possible they could cause pain like this.

I finally got it treated when I took myself to a gyn surgeon who was willing to do laparoscopic exploratory surgery. When she did, she saw I had a lot of scarring and adhesions, including on my appendix, so they took that also. Haven't had a problem since then.
posted by yes I said yes I will Yes at 5:24 AM on March 29, 2018 [10 favorites]

Get a exploritory laparoscopy from a good doctor. Seriously. The one who did mine in Chicago is amazing.

Ultrasounds suck at finding endometriosis.

My intestines were adhered to my abdominal wall due to endo. But there was 'nothing wrong' until I had that test. They zapped it and my life is a zillion times better.
posted by AlexiaSky at 5:56 AM on March 29, 2018 [9 favorites]

For me, there are a few options for treatment. I'm currently using the Medina IUD, and the next step (which I need to make an appointment to do) is starting on lupron.
posted by AlexiaSky at 6:05 AM on March 29, 2018

Sounds spot on for endometriosis, especially if hormonal birth control helped. As mentioned there are many other formulations of birth control that you could try that may not give you the side effects you experienced. For example I HATED NuvaRing, Lo Ovral, and Ortho Tri Cyclen but have had fantastic success with Yasmin.
posted by joan_holloway at 6:14 AM on March 29, 2018 [1 favorite]

I have experienced literally this exact same thing, including the "so bad it wakes me up from sleep" pain right near my appendix, and despite nothing conclusive showing up on an ultrasound, my gyno is certain it's endometriosis.
posted by phlox at 6:30 AM on March 29, 2018

I just read an article about endometriosis taking up to a decade to diagnose, because symptoms mirror other issues and are often idiopathic, and because it can also present with no symptoms at all. It's not until women experience fertility issues related to it that it gets properly diagnosed.
posted by headnsouth at 6:48 AM on March 29, 2018 [1 favorite]

Mittelschmerz?
posted by charlen at 7:08 AM on March 29, 2018

Me too, and it's almost certainly endometriosis.

I had been on a no-frills HBC for years then got a Mirena about 6 years ago. The IUD is great in a lot of ways (none of the big drawbacks of a hormonal pill, super antibaby powers) but I noticed a lot of endo symptoms creeping back as the hormone in the IUD was wearing off. Particularly the super fun abdominal pain and GI symptoms.

I got my IUD out in January and immediately started on lo loestrin fe. That pill is low enough in hormones that I haven't noticed any problems yet (woohoo) and so far all of my gut symptoms are GONE.
posted by phunniemee at 7:23 AM on March 29, 2018

Endometriosis.

I want to support you in avoiding hormonal birth control, fwiw. I think it has catastrophic adverse effects on some people and if you are one of those people (like me) no amount at even tweaking the type/dose is worth the side effects.

Nthing nthing a laparoscopy. A little laser surgery and you are a changed woman. The pain goes away. The end.

I took me 3 years and 8 doctors to get diagnosed. 8 Fcking doctors. I was so pissed off when I was finally diagnosed, was in surgery within weeks, and after that was totally cured. So, uh. You'd think it's common and therefore easy to diagnose, but a quick peruse of the comments in this thread tells the opposite story.
posted by jbenben at 7:37 AM on March 29, 2018 [2 favorites]

I had similar and the Mirena helped a lot. I hope you find a solution.
posted by warriorqueen at 7:44 AM on March 29, 2018

You could try finding an endometriosis support group nearby for support and help. It would be a good way to discover local doctors and treatments that people have tried. We used to put people in touch with specialists that we knew took the issue seriously.
posted by Poldo at 9:40 AM on March 29, 2018 [1 favorite]

Definitely sounds like endometriosis.

Since I'm not sure where you are: if you (or anyone reading this in the future) need a great (and trans-friendly) gyn in Austin, TX, MeMail me.
posted by Tiny Bungalow at 12:30 PM on March 29, 2018

To answer more, you should see a gynecological surgeon. I know I've told this story before but I had the same gyn for years who was shruggy about the whole thing like I was being a wicked baby and couldn't handle pain. It was only once when she had to leave and was being covered by a new to me gyn who immediately referred me to a surgeon and within a month I was fine.

Demand a referral to a gyn surgeon, ideally a female one.
posted by yes I said yes I will Yes at 1:29 PM on March 29, 2018

Hello, yes! This is very possibly Endometriosis. No external test will detect it. You need a surgeon who specializes in RESECTION or EXCISION surgery to consult with. (Other surgeries are NOT effective.) Here's my ask before my surgery with very helpful info that probalby saved my life.

My regular OB/GYN agreed it was endo before I visited my surgeon. Surgeon visit went like this
Me: [List all my symptoms] Him: And have you always had bad periods? (yes) Did you miss any school or work because of them? (yes) [Does exam] Yep, sounds like endo. We'll schedule you for surgery.

(I had to do an extra CT just to check something that turned out ot be a cyst.)

Also SEE IF THEY WILL REMOVE YOUR APPENDIX TOO!!

I have stage 2 endometriosis. I requested they take my appendix because I didn't want any further surgery. He saw a blister on it and sent it to pathology: Early Acute Appendicitis Yeah, so apparently I had appendicitis that no tests found either.

Surgery was about 10 months ago and it's amazing the difference. There's no cure and I have other health conditions so my periods still suck. But I'm not in pain 24/7. My periods are shorter. My cramps are manageable. My stomach isn't the size of a watermelon.

Prior to this I also had gallbladder disorder that tested "normally" and I insisted on having it removed and that was a major problem as well. I also have POTS, IBS, and GERD so yeah, I totally understand where you're coming from and have spent years figuring it all out.

Feel free to DM me or find me on Instagram where I talk about this stuff. I highly suggest finding an expert endo surgeon.
posted by Crystalinne at 2:04 PM on March 29, 2018 [3 favorites]

Family member had similar symptoms which, untreated, got progressively worse. Endometriosis with adhesions; laproscopic surgery dramatically changed her life for the better.
posted by Nancy_LockIsLit_Palmer at 3:48 AM on March 30, 2018

Also, supporting you on avoiding hormonal birth control if it doesn't work with your body. It triggered my lupus flares horribly. I couldn't get my (male) OB/GYN to believe the severity. Had to change docs.
posted by Nancy_LockIsLit_Palmer at 3:52 AM on March 30, 2018

Real longshot but you could try an OTC gas reducer (gasex etc) too, right side is where gas bothers me most and its worse once a month.
posted by meepmeow at 2:38 PM on March 31, 2018