I had pelvic clots, with no clots in my legs. My clots were caused by pelvic surgery, so it would probably be hard for me to really accurately the pain that was clot related vs. surgery related. I will say, the one key symptom that I can almost certainly attribute to my clot was a horrible cramp in my butt. Not long after I had almost a lack of sensation in my foot. I could feel it when I touched it, but it was a really strange feeling. I also remember telling the doctor the day after surgery and again a week later on my first re-check that I had a strange sensation in my legs, but I couldn't really describe it. It was almost like an absence of feeling, but again I could feel touch, and had zero swelling. I thought it was actually a lack-of-pain that felt so different after years of back pain that caused my legs to always feel tight. I also have mild IBS, and I can say that none of my clot-related symptoms were even remotely similar to IBS symptoms. I attributed all my symptoms to recovering from surgery, and since my OB/GYN agreed that was probably the case I didn't think much of it until I wound up at my GP with my heart rate over 200, followed by bloodwork, a trip to the hospital for a CT and 3 more days in the hospital with multiple bilateral PEs. Even after the fact, the pains that disappeared pretty rapidly after beginning warfarin weren't abdominal cramping type pains, but sharp shooting pains in my side and chest. I would guess (but I'm definitely NOT a doctor) that it is not likely a clot if you're on heparin. Again, this is just my experience. I can't really give you any advice other than to always check with your doctor when in doubt! I did that so often for the first year that my doctor actually had her nurse call and check in on me last week because she hadn't heard from me in over 3 months and wanted to make sure everything was ok!! :)
Good luck!

If you're on heparin, the chance of developing a new clot is practically nil. I mean, it does occasionally happen that someone will clot when on thinners (usually if their INR drops out of range or if they've got a known clotting disorder and their INR is too low) but it is super, super rare.

I mean, even if it was a clot that was initially overlooked, they wouldn't change your treatment. You'd still do exactly what you're already doing, which is taking anticoagulants.

Did the doc give you anti-anxiety meds? That'd be one way to tell if the pain is anxiety-related.

Thanks Jenner and Toss. I think I have been desperately trying to track the course of my symptoms over the last few months so I will know what is serious and what is not. Every ache or pain is making me anxious. The thoughts of going through it all again fill me with dread (plus the worry and hardship it causes my family). I cant help 'linking' up symptoms and finding the most sinister explanation possible, including another clot and underlying cancer. Thanks for letting me know your symptoms Jenner, they do sound quite different from what I am currently experiencing.

Toss, the doctor gave me treatment for ibs- peppermint capsules and an anti-spasm medication. He told me I needed to 'manage my stress'. I wanted to strangle him quite frankly!

I am going to see how this goes over the next few weeks but I think I need a ct scan to just put my mind at rest. However, convincing the doctor of that is another matter......Its either that or I will have to get some meds for anxiety.

Thanks for you advice.

Hi,

I have delt with IBS for most of my life. Since a week or two before I was diagnosed with massive, bi-lateral PEs, the IBS symptoms had gone wild. 7 months later, the IBS symptoms are still a lot worse than usual.

One thing I do know is that stress is a major trigger for IBS. Considering the trauma caused by the PE, i would say that PE can be a huge trigger for IBS. And the stress associated with surviving a PE is also a major trigger.

I agree with the others that being anti-coagulated reduces the risk of another clot tremendously.

I hate to say it but your doc is right. You do need to find a way to manage the stress. It is a trigger for IBS for sure. Also, we become so hyper vigilant after a PE that we focus on everything going on in our body. That takes a huge mental, emotional and physical toll after a while. Recovery is mind body and spirit that is for sure.

What kind of symptoms do you get from IBS? I have always struggled with transient stomach problems. There was a time two years ago when I was crapping up to 11 times a day. There has been times where I went for months where I couldn't even finish a meal in a restaurant before having to run to the bathroom.

It was really embarrassing. Even though I am a lot better now due to I think taking pain meds and having a little bit of blockage. I still have to not eat anything on days when I will be out all day. When I am going to be out in public all day, I don't eat anything in order to stave off having to go to the bathroom a lot.

Also, I have to wait until I go to the bathroom twice in the morning, or an attack can happen when I am out in public. On days when I am not going out, the symptoms are not as bad, which leads me to believe that it is anxiety driven. I had someone report me for huffing paint in a restroom on the job once because I used to get up and go to the bathroom 6 times a day. That is why I despise office jobs.

Despite all of this it is way less pronounced since my DVT/PE, but I still have issues with my bowels. Also, most of my bowel movements look like ribbons which I have read can be a sign of damage, or narrowing of the walls in the large intestines.

I know what it feels like to be a slave to the bathroom and it ain't no fun. Like I stated earlier, I attribute the remission in symptoms to less stress and the consumption of pain medication. I never went to the doctors for treatment because I always figured it wasn't that serious. It isn't fun having multiple medical issues that's for sure.

Thanks for the responses. My IBS is usually mainly cramps, nothing as bad as you experience Jerry. It feels like my bowels are in spasm and I get back pain. I know I am very anxious at the moment and it may be that simple (I hear ya rmb). I am getting really frustrated with myself. I still feel sure I have some underlying malignancy, just cant shake it. I didnt get an abdominal ct in the hospital because I didnt have serious symptoms to warrant it according to the doctor. I feel I will have to wait this out and if it doesnt get better in the next few weeks go back to the doctor (AGAIN!).
Sorry for the moaning......I just cant shake the feeling that something worse is down the tracks....
Thanks again.

I hope it's nothing serious. It may very well turn out to be something no consequential. Please keep us posted on what happens.

Startalloveragain,

Because I had no definitive reason for my clots, I was concerned about malignancy too. I talked to my hema about it and he said if I had cancer, I'd likely be symptomatic of it (not just cramping but serious weight loss, sketchy blood work, etc). He may have been just trying to sooth me but it kind of made sense. I know that's not always the case, but it did ease my mind. Now, 5 years later , I'd likely be dead by now if I had an unidentified malignancy.

When you were diagnosed with IBS, did they rule out other GI issues or reproductive issues? IBS is a diagnosis typically made when other diseases or health issues are ruled out.

I have ulcerative colitis so I get having gut issues. But lately, I've also been getting ovarian cysts which causes me cramps, back pain, gut pain, leg pain, you name it. I'm not saying you have this or anything other than IBS, but just saying what you're experiencing could be a lot of things.

Also, if you're on warfarin, that can cause you some GI issues, like bloating and cramping: http://www.drugs.com/sfx/warfarin-side-effects.html

I felt emotionally very out of control after my PE. Well not right after, but like a month or so after, I started developing serious anxiety. I felt like I was on high alert CONSTANTLY, hyper vigilant about every pain, twitch, and ache. So know as well that sometimes that can cause all kinds of physical issues as well. That's not to dismiss it all as anxiety, but just to show how freakin' complex it all can be.

Sorry, I mentioned being on warfarin but it looks like you're on heparin.

Thanks Jerry and rmb. The cramps have started to ease a bit in the last few days. Now I have had 2 days of extreme fatigue and SOB. I am beginning to think this is anxiety and probably depression as well. I have have been so afraid of dying......so worried about my child and on top of that have an insecure job.

At the moment everything seems so hard.......Trying to put a brave face on for family and work just adds to it.

hi honey..you seem as down as me :( ive had endometriosis for about 7 years severe abdominal pain etc and but on meds for ibs and everything!!! then they put me on the pill..which they now think have caused the clots!!!
ive also had my meds changed to deltaparin shots as the warferin was not helping me at all...
i asked if the endometrosis could have caused my pes because endometiosis is blood or lining that goes all over your body potentially and he said no..so i think you have a very very minimal risk of it being a clot if i havent got it from that then id say you definitely wont have.
This anxiety is a bloody horrible thing isnt it!!! the advice is right hun..even if you did which is extremely unlikely get another clot you are on the meds to treat it so you are still at low risk..from dying from a clot...jeez ive been to the a&e enough to know this..think ive got a bed with my name on it ;)
i controlled my anxiety so well while i went away this week..i smacked my head on a cupboard when i stood up..really hard and spent about 17 hrs or more trying to convince myself i didnt have a bleed on the brain...sometimes with this anxiety i feel like someone has pinched all my rationality and replaced it with a complete idiot!!! hopefully we will control this and look back and laugh

sending hugs
kt x