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Finally getting somewhere...or at least I hope so.

Posted , 3 users are following.

cabbage12
cabbage12

I went back to my GP yesterday as my pill is nearly done and i wanted to find out what my next steps are for diagnosing my pain. After my horrible experience at gynecology where they washed there hands of me, I have been referred to General Surgery to find out what is wrong with me and what is causing my pain. My GP even read the letter he sent to them to me, and put in it that is think it could be endo. Lately my pain has been worse, to the point i had to leave half way through a lecture and doubled over in the bathroom, almost crying ( didn't help that it was a lecture about pain and assessing pain, ohh the irony). He believes that i might need a collaboration of gyni and general surgeons to get to the bottom of my pain. He said that because i am a young women (19) with non specific abdo/ pelvic pain it is going to be a nightmare to diagnose. I just want to know what is causing my pain and how, if it can, be stopped.

However on the down side, this is the second GP that I have seen for this problem that is leaving the practice, which i don't think is helping my situation. MY first one who did the referral to gyni left a few weeks after i saw her and now the one i saw yesterday is retiring. Why is this happening to me. He did tell me to look after myself as I was leaving which i thought was really sweet of him.

At least this is a step in the right direction to a diagnosis and treatment. or at least I hope so.

0 likes, 6 replies

6 Replies

  • k51551
    k51551 cabbage12

    Posted

    I'm so sorry to hear you're having such a horrible experience, Cabbage. sad

    There are so many different types of disorders/conditions/diseases that can cause unspecifice abdominal pain. I'm sure it's frustrating for the doctors too, but they don't have to live with the pain you have. 

    I'm assuming they've tried treating it as IBS with medications, I'm assuming they've done vaginal and abdominal ultrasounds as well as CT scans or MRI's, and I'm assuming they've given you a colonoscopy too, along with all the standard blood work to check your organs are functioning properly....? If not, I'd want at least the imaging studies. blood work and the colonscopy done before I jumped into surgery...unless they gave you a specific reason they want you to see a Surgeon? 

    • cabbage12
      cabbage12 k51551

      Posted

      Thanks for the reply k51551. The only investigations I have had has been blood work, hormone testing and vaginal ultrasound back in February. I realy hope that the doctor I see today sends me for a mri or a ct scan.

      The reason I have been sent to general surgery is because they did my laporoscopy and removed my appendix in 2010 and my gp wondered if there was a link. And to see if they had any other ideas as to what could be wrong.

      But todays the day so hopefully by 6 pm I might have dome answers or at least an action plan

  • k51551
    k51551 cabbage12

    Posted

    Aha. That explains some things. I wondered about your appendix too. Since you don't have that anymore, at least it's one less thing to worry about. :D

    Do you think they suspect that it's scar tissue from the appendectomy maybe? 

    Hmm. So they were in there doing a lap to yank your appendix in 2010 and didn't see any Endo then? You could have certainly developed endo in 4 years. I don't want to pry, but were your ultrasounds and hormone blood work all normal...no indications of abnormal hormone levels or ovarian cysts I hope.

    I can tell you that if they determine it is endo, you have so many options for treatment. There is no cure, and as far as I understand, professionals aren't even exactly sure how or why we get endo, but they do know which hormones successfully treat the pain and implants for the majority of patients. Not every treatment works for every woman so you may have some trial and error to find the right treatment for you, but don't feel deflated if your diagnosis is indeed Endo. I suffered for a few years before I finally had a lap and was confirmed with endo (and several cysts - those are awful). I was convinced I'd never find the right treatment and it only took two hormones before I found one that worked (so far, so good!). And there's always surgery if you get desperate (though again, there is no cure or guarantee even with a hysterectomy).

    I had a (bad) doctor tell me that Endo only caused pain during a period. Which is not true...at least, for me it wasn't. I suffered for a good week before my cycle started, felt great as soon as my period started and then when it was over, the pain crept back up all over again for a week or two. I literally would have one to two weeks per month when I wasn't suffering and the rest of the time I was miserable. So I understand the crippling pain and the depression it can bring. 

    I'm in America and I have an excellent doctor now who listens to me. If I asked for a CT for something and had a good reason, she'd order it for me. I assume you're not in the States (only because it sounds like it's morning where you are and it's late night here :D ), and I don't know what the protocols are where you live, but if you request a CT, are they likely to give it to you? I would imagine they'd certainly give you a CT before they'd agree to go into another surgery - much less invasive and less risky for everyone. I'm surprised they haven't ordered that already to rule out any number of possible causes for ab pain. 

    Best of luck today; keep us posted please.

    • cabbage12
      cabbage12 k51551

      Posted

      No, no endo was found during the operation. Although the surgeon mentioned that y right ovary was polycystic in appearence but it was never followed up as it didn't show up on any scans.

      All my tests have come back normal, only a small folicol on my ultrsound.

  • cabbage12
    cabbage12

    Posted

    So went to may appointment today at 5pm. I was a bag of nerves all day and took my mum with me due to my previous experience at gyni. I got seen by the consultant 20 minutes late as he was doing surgery. He asked me the general questions and what test had been done so far, then had a feel of my belly and asked a few more question. He believes it is adhesions from my appedix surgery 4 years ago, but doesn't want to procced in doing anything yet. He doesn't want to do a CT scan due to my age and the level of radiation ( in his words because i am a young woman) or a laporocopy as it could do more harm than good and cause more adhesions. So I am getting sent for an abdo ultrasound ( as i only had a pelvic ultrasound that didn't go over the area of pain) to check what is going on and will been seen again in 3 - 6 months and see if the pain has increased or not by then. 

    I am glad they are taking me serious this time but I still feel like I am getting nowhere. Only time will tell I guess. At at the current rate my pain is increasing and I going to be doubled over 24/7.

    Part of me still thinks it is endo or something gyni related as the pain increases when I am on/ due my period.

  • k51551
    k51551 cabbage12

    Posted

    Did you tell this doctor that your pain seems to be aggravated by your periods? 

    I'm glad they're at least doing some additional imaging; it's better than nothing. They are super resistant to giving CT scans due to the radiation here too.

    Have you tried hormone medication that is generally used to treat endometriosis to see if it helped? If you've posted about this  in another thread, I'm a newbie and haven't read about it yet...so sorry if I'm asking a question you've already answered.

    I've had a LOT of relief with a lap for Endo to remove the adhesions and followed up with Norethindrone, 7.5 mgs daily (progestin only pill). I really think you need to refer back to GYN for further analysis if you think your condition is related to your cycles. Can you request a new/different OB/GYN than the person you saw there last?

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