Second Opinion? Other Doctors to See?

[brooklyn23]

I'm thinking about seeing a new doctor for another opinion. My OBGYN has ruled out basically all gynecological causes of my worst pain even though it is clearly linked to ovulation, and ruled out gynecological reasons for my day to day lesser pains.

My Gastroenterologist just did the pillcam and didn't see any major inflammation, some red lesions and redness near the ileum.

I'm tired of nine years of not knowing what's wrong with me, or what's causing these problems. But I don't even know what kind of... well.. third opinion I'd be looking for.

 

[nogutsnoglory]

Can you let us know exactly what kind of symptoms you have? Is this only related to your period?

 

[stewraz08]

I would ask your doc for a colonoscopy. I was misdiagnosed for five years and most doctors said it was female ovarian issues. I finally got a great OBGYN who said I was fine and the issue was gastro. All my ultrasounds and other tests never showed the problem. After my colonoscopy, I was diagnosed with Crohn's. Although I am not pain free, I am at least starting down the path to get into remission.

 

[brooklyn23]

I have had a colonoscopy. It was clean. It was clean 4 years ago when I was diagnosed with ileal crohns.

My primary symptom, the one that got me medical testing in the first place was debilitating pain on my lower right abdomen. Cysts were ruled out. As was appendicitis. After a few years I found the pain was around the time I ovulated but that was after I was diagnosed with Crohns. Very mild but I had inflammation in the ileum. As time went on I still had low level pain in that area. (I had at one point been on the pill and while it stopped the massive attacks I still had pervasive low pain.)
I am very fatigued with occasional anemia and vitamin d deficiency and a tendency to be constipated, much more often recently.

I had a laparoscopy in August to rule out endo and found nothing out of sorts in my reproductive system. I didn't have any ovulation attacks until January when constipation and joint aches and fatigue hit me again along with a three week cold or couldn't recover from. My doctor says there was blood in my stool. I didn't see it but some test showed it. But I was wondering if it might have been from the surface because the skin around my anus gets irritated easily.

I don't know what to do

 

[Georgie98]

Hey Brooklyn23,
I had a similar problem, the route of my ulcerative colitis stemmed from heavy periods, I had a laparoscopy to rule out cysts, endometriosis. Anyway I was all clear which I didn't think was right, it was only after my second laparoscopy where they took my appendix out that they found there was something wrong with my ovaries.
I would ask for a colonoscopy and another laparoscopy as they say it takes an average of 3 laparoscopy to find anything.

 

[UnXmas]

What is the pain like? E.g. cramps, continuous pain, burning, etc. and does anything (besides ovulation) worsen or help to relieve it? E.g. applying a hot water bottle, eating, lying down, having a bowel movement, etc. Does the pain vary in severity over hours/days?

I'm usually not a fan of people seeking or giving ideas about diagnosis online, but in this case it seems that if anything can bring you closer to an answer, even if it's just a suggestion of which organ may be involved or what medical specialty you may need to see a doctor from, it might be worth trying.

Do you think it could be related to the constipation you mention? I'm sure you've already considered that, it's just that with constipation being so rare with Crohn's, I though it may be relevant. It also wouldn't necessarily show during scopes, if there's a problem with the way your bowel works rather than in the bowel itself. Constipation could also cause damage in the rectum and cause the bleeding, but again I'm sure you would have emphasised the constipation more if it was significant enough to do that.

Also have you considered bladder pain? Bladder problems can be affected by menstrual cycles in women.

 

[brooklyn23]

On a regular basis the pain is kind of crampy and dull. I'm not really sure what makes it worse. Lately eating is not helpful at all. It comes and goes and it's usually on the lower right side but not always. I think sitting makes it worse, because there's compression in the abdomen? --Someone also once told me that constipation was more likely to occur in small bowel crohns. My colon has always been fine, even when I received the initial diagnosis.

The pain attacks linked to ovulation are... I can't even describe it, because it's too overwhelming. It is continuous. If you would imagine the pain like a lightbulb, it starts like a little Christmas tree light on the lower right hand side, and eventually turns into a massive stage flood light that takes up my entire torso and spreads through my limbs straight to my fingers. Heat makes it a little better, movement makes it worse. But there's no way to relieve it other than to sleep through it which usually takes 2-3 days. Day 4 is better, but still painful. And then two weeks later I get my period. :/ The timing is always the same.

It's not bladder linked, urination has no effect.

 

[brooklyn23]

Oh and I guess it should be pointed out that my gynecologist confirmed that I experienced those debilitating symptoms (though to a slightly lesser degree), even when the left ovary is the one to ovulate. Still starting on the right side.

Once in the ER for one of these attacks, they found an inflamed lymph node in my abdomen. I don't know what that even means.

 

[brooklyn23]

After lunch today I can confirm that yes eating makes it worse. And that I'm vacillating between constipation and urgent soft stool. Had D last weekend, semi-urgent mush today. (I started Pentasa last night, no idea if that affectd it.)

 

[UnXmas]

That sounds awful, I'm sorry I don't have anything useful to add. What kinds of painkillers and other treatments have you tried? Did your obgyn or gastroenterologist have any idea about which specialist you may need?

 

[brooklyn23]

For the big pain my Gastroenterologist just kinda shrugs and says "ovulation pain can be severe"... My OBGYN said that it would go away after being on the pill for 6 months (it didn't), but that there's nothing wrong.

For the day to day... the gastro just put me on pentasa to see if that would help, because there was some redness in the scope but no ulceration like before.

 

[nogutsnoglory]

I'd suggest seeking another opinion since this dr can't seem to figure out what's wrong. Based on what you wrote nothing came to mind either. Wish I could have been more helpful.

 

[brooklyn23]

I guess. I just don't know where to begin and I hate going back to square one. I mean, I think one of the prevailing theories for a while was that ovulation while flaring was an issue. But I don't even know. :/
Bah, now I'm having a crampy day and I hate it.

 

[UnXmas]

For the big pain my Gastroenterologist just kinda shrugs and says "ovulation pain can be severe"... My OBGYN said that it would go away after being on the pill for 6 months (it didn't), but that there's nothing wrong.

For the day to day... the gastro just put me on pentasa to see if that would help, because there was some redness in the scope but no ulceration like before.

What about actual painkillers? There are lots of options out there for treating pain as a symptom rather than trying to treat some underlying cause like inflammation. If you can't find or treat the cause, you could still treat the pain.

 

[brooklyn23]

There isn't anything that helps the pain. Nothing

 

[my little penguin]

Have you seen a urologist ?
Ultrasound of your kidneys ?
I had severe kidneys stones -actually stuck in my kidney for 3+ years
Horrid pain
Was told it was ovaries /ovulation/cysts etc.. For years

When DS was dx with crohns -he had a ct which showed cysts on his kidneys

Which led me to have an ultrasound of the kidneys --
That was when they found the large kidney stone that had caused my kidney to swell
No other signs except pain that would come and go ( basically the stine would bob up and down and block the kidney )

Other possible issues are referred pain from the bladder

Good luck

 

[UnXmas]

There isn't anything that helps the pain. Nothing

I'm not sure they'd be a good idea, but have you ever tried strong opioids, as in morphine and stronger? One other thing that helped me once with really severe pain was diazepam. I had post-surgical ileus, which is incredibly painful but I couldn't have any opioids because the effect they have on the digestive system makes ileus worse. Diazepam relieves physical pain by relaxing your muscles, as well as relaxing you mentally which can make pain easier to deal with. Both diazepam and strong opioids come with all sorts of problems involving addiction and tolerance, and I don't know if they'd be at all suitable for your situation, but there may be something that can help you - have you seen a pain specialist? There's usually something left to try, including medications not primarily used as pain relievers.

 

[brooklyn23]

Have you seen a urologist ?
Ultrasound of your kidneys ?
I had severe kidneys stones -actually stuck in my kidney for 3+ years
Horrid pain
Was told it was ovaries /ovulation/cysts etc.. For years

When DS was dx with crohns -he had a ct which showed cysts on his kidneys

Which led me to have an ultrasound of the kidneys --
That was when they found the large kidney stone that had caused my kidney to swell
No other signs except pain that would come and go ( basically the stine would bob up and down and block the kidney )

Other possible issues are referred pain from the bladder

Good luck

My kidneys were already looked at when the whole thing started, there's nothing wrong with them.

 

[brooklyn23]

I'm not sure they'd be a good idea, but have you ever tried strong opioids, as in morphine and stronger? One other thing that helped me once with really severe pain was diazepam. I had post-surgical ileus, which is incredibly painful but I couldn't have any opioids because the effect they have on the digestive system makes ileus worse. Diazepam relieves physical pain by relaxing your muscles, as well as relaxing you mentally which can make pain easier to deal with. Both diazepam and strong opioids come with all sorts of problems involving addiction and tolerance, and I don't know if they'd be at all suitable for your situation, but there may be something that can help you - have you seen a pain specialist? There's usually something left to try, including medications not primarily used as pain relievers.

I was put on morphine once when I went to the ER (this was back in 2010 before I had a diagnosis of any kind). It didn't really help the pain -- it made me care less about the pain, but it didn't make it better.

 

[UnXmas]

I was put on morphine once when I went to the ER (this was back in 2010 before I had a diagnosis of any kind). It didn't really help the pain -- it made me care less about the pain, but it didn't make it better.

Do you know what dose of morphine you were given? There are many options besides morphine also. Don't give up based on one try with one med.

 

[Lady Organic]

did you have endo-vaginal ultra-sound?

 

[brooklyn23]

did you have endo-vaginal ultra-sound?

I did. Multiple times. Nothing out of the ordinary. Though once they saw I'd ovulated on the left when I had an attck of pain on the right.

 

[Lady Organic]

I think sometimes when there is no answer from the medical department, investigating in lifestyle can help. Have you ever tried acupuncture? Acupunctors, beyond needle treatments, are pretty good at favoring toward good lifestyle habits, such as nutrition, mind-body relaxing activity (Gi-quong, yoga, etc...). Could be an option for you. acupuncture schools are great places, the most experienced acupunctors are there and have a lot of knowledge about traditional Chinese medicine.

 

[brooklyn23]

I think sometimes when there is no answer from the medical department, investigating in lifestyle can help. Have you ever tried acupuncture? Acupunctors, beyond needle treatments, are pretty good at favoring toward good lifestyle habits, such as nutrition, mind-body relaxing activity (Gi-quong, yoga, etc...). Could be an option for you. acupuncture schools are great places, the most experienced acupunctors are there and have a lot of knowledge about traditional Chinese medicine.

I guess, I can't really imagine it would hurt.
But the pain is lifestyle resistant. I went through major life changes since the onset, lost 50 lbs, changed my eating and exercise habits. It didn't stop it.

 

[UnXmas]

I've had a lot.
Codeine, Percocet, OxyContin, Vicodin.
My family got into the habit of giving me anything that was left over from dental surgery or injuries when I had these big attacks. All they did was make me sleep. It didn't help the pain.
Nowadays I take Zzquil and just knock myself out.

I'm sorry - I should have guessed you'd have tried a few things by now. I also know exactly what you mean in your last post by "lifestyle resistant". I don't have lifestyle resistant pain, but I do have other symptoms that are lifestyle resistant (and alternative therapies have never helped me either).

The only other thing I can think of at the moment is trying medications that are used for pain even though it's not the primary reason for which they are prescribed, like the diazepam I mentioned. Diazepam does treat pain directly, it doesn't just make you care less about the pain. When prescribed as a painkiller, it's usually for painful muscle spasms, as it relaxes the muscles. Another medication I take which can treat pain is amitriptyline; it's an antidepressant, but it also treats nerve pain, fibromyalgia and abdominal pain from digestive problems. I also use it the same as you use sleep meds - it knocks me out when I have other symptoms going on and lets me sleep despite considerable discomfort. Of course there are times when I've symptoms so bad that I'll be awake whatever I take, but at high doses amitriptyline is a very strong sedative and it takes a lot more to keep me awake when I take it than it would without it.

I'm not giving these examples because I think these particular medications may help you, I just wanted to make sure you're aware that you may be able to find relief from pain where you wouldn't necessarily have expected it. Antidepressants in particular - many tricyclic antidepressants and SNRIs can treat physical pain.

 

[brooklyn23]

I'll talk to my doctor about it the next time I have an attack. I think I have some muscle relaxers around from a martial arts injury (though for the life of me I cannot remember what that injury was.)

I'm already on SNRIs for anxiety and depression. I was on Cymbalta but my insurance is jacking up the price on me, and since I'm taking Pentasa, I can't really afford both. So I switched to Effexor.

I just got really sad thinking about martial arts injuries in general. I had injured my ankle sparring on a Wednesday and was super excited to be getting back into the swing of my art... and then that Friday I had a huge pain attack and haven't been up to speed since.