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Loneliness and anxiety

Hello everyone!

I‘m new to this community and I thought after I‘ve had lots of pain and confusion I would just try to reach out over here.

I‘m not fully diagnosed yet but I‘m in the process and wait for an appointment at a specialist. But I have so many symptoms that just speak for endometriosis and I am very scared.
All my symptoms are mostly connected to my gut. I‘ve always had intestinal pain, like attacks every time I came put to my period. I went to gastroenterologists and had a colonoscopy and gastroscopy. Nothing came out of this, all seemed fine. So I lived with this weird pain for another six years until I noticed the pattern and went to a gynecologist. He listened to me and suspected endometriosis, put me on hormones that should get rid of my period so I wouldn‘t have these very painful periods as well (I didn‘t mention that yet, but I have heavy excruciating periods also), but I didn‘t really tolerate them. They gave me even more intestinal pain and when I told my gynecologist about that, he had no clue why I had all these symptoms (even tough I had read about endometriosis that could spread to the intestines and gives you pain there). He had no idea and send me to the E.R. After I had another painful attack. There they did nothing than take blood and said it was IBS and sent me home.
After all that I stopped taking that pill/hormone he suggested to me a couple of months ago, because I felt like the suppressing of my period made everything just worse. I got my period a few days after I stopped taking it and it wasn‘t too bad because I managed it with things like a TENS device and other things.
But now after three weeks of just a bit of pain here and there (now being one week away from getting my period again) I am in constant pain when it comes to having a bowel movement. The pain is sharp, cramp like and almost as if small lightnings shoot through my lower belly. I have bad lower back pain and pelvis pain.
I am so scared because I don‘t know how to handle this right now. My gynecologist doesn‘t know either and I just wait until the appointment at the specialist comes up but that‘s still a month away. Every time I feel that pain in my belly I almost get a panic attack.
Now that Christmas is coming around I feel even more pressured to be healthy and functioning to help my family with preparation of food and everything but I just can‘t.
I‘m very scared and asking if anyone would have any suggestions on what I can do to help with the pain until the appointment at the specialist?

  1. Hi there! Firstly, just wanted to welcome you to the endo community. We are glad you found us and hope you know that we are always here for you, so reach out anytime you ever need.

    I know waiting for a diagnosis can be super scary. So many of us totally understand. I am glad to hear that you do have a specialist though - that certainly sounds like a great first step.

    Your story sounds super similar to mine! All of the GI issues and painful periods. Just for doctors to tell me I am fine and also throw birth control at me. Which caused more symptoms for me as well. I am so sorry to hear you are dealing with all that pain and stress.

    The pain can certainly make life, hard and cause so much stress. The stress alone can actually intensify the pain as well. For me, I try to incorporate meditation, breathing techniques and light yoga stretches when I am feeling that extra stress coming on. Does it fully help? No... but it does give me some relief.

    I think a few other tools that help me during those high pain days are, TENS unit like you mentioned, a weighted blanket, massagers that are made for back/stomach, heat pad, CBD oil or lotion, and one really big one is watching what I eat and switching up my diet. That definitely plays a big factor in how much pain I am in as well.

    I hope you do find some relief and that you were able to have an enjoyable holiday. I am so glad you do have your specialist appointment and I know it feels so long away but it will be here before you know it. You got this warrior. Sending you all the good vibes and gentle hugs I can. Remember, we are here for you, so please comment/message us any time you need <3 -Kimberli (advocate)

    1. Oh wow that sounds like a lot that you deal with. I think it‘s a good idea to also take other possibilities into consideration like SIBO or gut bacteria issues. For me its not as severe as you described it.
      I feel mostly okay after my period, gut and food wise, just a little sore and irritated in my lower belly. But when I am ovulating or just starting my period, my gut issues flare up and everything gets worse. I suddenly have low motility in my stomach, heartburn, bloating and an irritated feeling in my intestines.
      I am currently trying to figure out my tolerance to certain foods during my whole cycle. For example, I try to see what I can eat during ovulation or during my luteal phase, how do I feel and what‘s triggering a reaction and so on…
      I don‘t know right now if it is doing something for me, but I just started so I think I still need time to see/feel a difference.
      Still I am so glad for your comment, it‘s nice to have a conversation with someone that understands 😀
      My appointment at the specialist was supposed to be in February but for some unknown reason they cancelled that one and I had to get a new one, which is now in March. I just hope that they‘re not going to cancel that one as well…

    2. it feels like so much to deal with. And I feel like a kid in a toy store because when we go grocery shopping and they are out of the one thing I can actually eat, I just want to have a huge tantrum in the aisle lol. But no seriously, it is such a pain and I have thought about SIBO. I brought that up to my GI doctor 2 years ago and she said 'we don't test for it here'. So I never looked into it again. But my guess is something like that HAS to be going on if I am to the point where 95% of foods bother me!

      I am glad yours is not as severe but it definitely still sounds so frustrating and annoying! Anything GI related is seriously the worst.

      I do know figuring out the right foods for the different times of your cycle could be so helpful. I am glad you are giving it a shot. Hopefully you do see some sort of relief, I am sure it will definitely take a little time to figure out.

      It really is so nice to have someone to talk about this with who gets it. Here to chat anytime you need. That is so frustrating that they moved your apt but thankfully it was March and not even later. Fingers crossed they keep this one!! <3 -Kimberli (advocate)

  2. Kimberli gave you some great tips here. But I’ll chime in with my experience. First, let me say I was very afraid something was seriously wrong but so far all my tests are normal, which brings me some relief. And I hope the same happens for you.

    But I recently went through a round of tests with my regular doctor because I was experiencing sudden spasms in my lower abdomen and on the right side (a typical spot of pain for me). I described them to my doctor as sometimes feeling like an electric shock that would spread through my midsection. The same kind of thing can happen around my tailbone. And I also I’d get these sudden spasms on the right or left side (near my ovaries) that would have me doubled over in pain for a few seconds.

    On top of all this, I routinely get a lot of pain and digestion issues the week before my period. But the electric shock-like symptoms and spasms were new. I went to my doctor, who gave me a transvaginal ultrasound to check for cysts/masses/fibroids or any other issues in or right around my uterus or ovaries. Everything was normal. She also checked my thyroid because I’d had irregular periods. Also normal. And I’ve tested negative for autoimmune conditions (which could signal something like rheumatoid arthritis).

    The only thing that we can think of is that this is triggered by muscles (or maybe scar tissue) tweaking my nerves or causing improper signals to fire — i also get migraines and something called allodynia (when you feel skin pain from things that shouldn’t hurt). It might also be from pelvic floor muscles issues since I’ve been diagnosed with pelvic floor tightness in the past, and this contributes greatly to pain with bowel movements.

    To end a long story, there doesn’t seem to be anything scary causing these issues for me. And stretches around my hips have been very helpful. So have progressive muscle relaxation exercises and pelvic floor therapy. And now that I’m less scared of what’s happening, the shocks have actually stopped for the most part. But please let us know what your doctor says!

    - Keri (team member)

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