Not sure what to do next

For over 2 years I've been dealing with horrible pelvic pain, nausea, fatigue, depression from not being able to get help. It's so severe I've had to drop out of college, stop doing my hobbies, cut back severely on how much I can work. I feel like a cripple. My periods are so heavy and literally last for 3 months straight, sometimes with only a week between.

I've been accused of being a drug seeker, told it was all in my head. Passed between pcp gynecologist gastroenterologist and psychologist. I've been told the periods are an issue but your pain isn't related- yeah right. Had tons of tests including ultrasound, ct, colonoscopy, hida scan etc etc. Been on ibs meds, elimination diet, more birth controls than I can count. Nothing helps. Without a diagnosis no one will prescribe anything for pain or nausea and my pain is so severe 1500 mg Tylenol just takes the edge off- and it's not worth the issues I'll give myself by taking that much.

I became convinced that I had endometriosis but it took a lot of searching to find a doctor willing to do the laparoscopy or even a d and c. Finally I found a doctor who did both of these and a hysteroscopy.

Much to my horror, they found nothing abnormal. They took some biopsies but don't expect anything unusual to come back. Where do I go from here? I can't live in this much pain. I recognize that I'm horribly depressed, I've been borderline suicidal in the past from the constant pain. I plan to see a therapist to help the depression, but I'll still be in pain. I feel like I've exhausted all my options. What tests can possibly be run? What haven't they ruled out- it feels like everything.

Any input would be greatly appreciated.

11 Replies

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  • Hi there

    It's very sad to read what you've gone through and without any resolve.

    May I suggest, stepping away from conventional medicine that you visit firstly a dietician (or at least look it up online) to rule out your diet ?

    Secondly you will enormously benefit from alternative therapies, I've been diagnosed with a simple cyst on my left ovary after 9 weeks of being told it was a soft muscle injury, and the pain has continued with irregular or non existent periods, nausea, ill feeling, pain and stress. I therefore recently visited a Reiki Master who helps realign our energy balance within the body. I'm going once a week and must say I've started feeling better and more importantly, feel positive that I'm on the road to recovery.

    Another area I looked into was the place where I live and how conducive it was to my health (or not as it was to be). I asked a Feng Shui Master to visit my property and she diagnosed a number of factors (without my telling her) about the property and it's possible  negatives on my health, which I've now started to remedy.

    Traditional big pharma opinions and medicine are not always the 'correct' method of healing.

    Wishing you all the best.

    Ritu x

  • Have you looked into Lupron Depo (spelling???) at all?  It is an injection by your gynecologist that essentially stops all estrogen within your body, usually for a 6 month time, which means you won't have a period at all during that time (or at least shouldn't)  You could try that to see if your pain is hormone/period related or something else.  At least it would help to clarify what is causing the pain.  I had it done about 10 years ago to help with chronic pain with my periods and to help with endometriosis.  It essentially puts your body into menopause.  It sucks to deal with hot flashes etc... but if it helps the pain, it might be worth researching.  Also, have you done any physical therapy or medications to help block pain in the nervous system (ie... Neurontin, Effexor, Cymbalta, lyrica)?  It might help again see where the pain is coming from.  I have extreme pelvic pain that hasn't truly been diagnosed either but I think part of it is coming from my central nervous system because my tests all come back normal as well.  SO frustrating!!!  Hang in there. 

  • Hi, which country do you live in. If UK which town / city. I would suggest if you live in the UK that you contact ' The Care Quality Commission in your area. You can contact them to explain your situation and ask for them to help you. If not in the UK, I would ask your health centre manager for an appointment to meet with you  to discuss your situation.  I hope you get the assistance you need.  Keep in touch.

  • Have you been tested for Diabetes? There could be a connection with the length of the period/s

  • Hi

    Sorry to hear you are suffering, your pain like many with pelvic pain could be from various sources. Your periods are definitely an issue and they need to get the bleeding under control as I know from personal experience bleeding like that alone will make you incredibly miserable - have you tried the mirena or implanon implant? Tranexmic acid which can slow down the amount of blood lost, birth control pills, provera tablets. You might initially need a combination of treatments to get the bleeding to stop. All of these are worth a try as they can easily be removed/stopped if they don't suit you but should ideally all be tried for at least 3 months. Have they carried out blood tests? Thyroid function, clotting screen, hormone levels etc. They rarely reveal anything but it might be something that could easily be treated causing the bleeding.

    The bladder is a major generator of pain which is why laps especially when carried out by specialists come back negative for endo or any other gynae problems. The one I'm thinking of is interstitial cystitis (not the same as bacterial cystitis). Often women get flare ups during their periods and if you are having them for 3 months at a time then this could explain at least part of your pain. There are a few ways to test for this the main one being a cystoscopy which looks inside your bladder. No cuts are required- I've had it carried out both awake and as part of a lap for endo and adeno as I suffer from all three. There is a lot that can be done to help with IC or bladder pain syndrome as it's now frequently called. Most people respond to very simple measures to control IC including diet which is completely different to an IBS diet, bladder instillations.

    Have you tried mindfulness meditation? It's not a quick fix or will simply make life wonderful but it's a tool that is increasingly being used in medicine to help with illnesses or general pressures of life. I use the headspace app which the endo specialist introduced me to and it does help. Or you can buy a book which has a CD attached. Mindfulness is used a lot for depression - Ruby Wax is a big advocate for it helping her. There are a lot of useful resources online too.

    Often pelvic pain requires more than one specialist. I see a gynae whose an endometriosis/pelvic pain specialist and specialist nurse, urologists and specialist urology nurses, pain management and women's health physio and rehabilitation physio and dietitian. So you might need to see 2 or more to help with your pain even if it comes back you have endo or not. The psych you saw was she/he a clinical psych? This might be more suitable rather than seeing a general psych as they are very good at dealing with anxiety and depression. Sometimes seeing someone who acknowledges you are in pain helps as it doesn't take away your pain but removes the anxiety of not being believed they may even have an idea on who you should see next. It also stops you feeling as though you are a hamster on a wheel going nowhere - hamsters enjoy it but humans rarely do!

    Also as someone else mentioned on here it's important to look after you so you might find acupuncture helps or reflexology- sometimes you can get sessions done for free or pay a fraction of the cost if carried out by trainees. It's very easy to stop doing hobbies especially when unwell but it's probably more important to do these. It maybe you can't do what you used to but it's a good opportunity to see what else you'd like to do and who knows where that could take you! Best of luck and let us know how you get on or you can message me privately if you'd prefer

  • I've been on all the birth controls and I really mean that. I haven't had the implant, that's about the only one I haven't tried. I've been on elimination diet. Definitely not diabetic. As far as medication, no one is willing to prescribe anything stronger than naproxen. This is one of the most frustrating parts- because no one can find a diagnosis, but they tell me without a diagnosis they can't prescribe anything- for pain, for nausea- even when I lose a ton of weight, for not being able to sleep-even when I was terrified to drive to work because I was falling asleep while driving.

    I've tried alternative medicine, switched to organic foods for a while, the special vitamins, etc. It just didn't seem to help and it was so expensive. And I'm basically bed ridden most of the time, so while I try to exercise, without any way to cope it's hard to keep up with the demands of every day life. A trip to the store is enough to put me out of commission for a day or more.

    I just feel like no one I've been seeing cares or knows what they're talking about. They'd rather pass me around between specialists, tell me there's nothing wrong with me. Every doctor I go to runs one test then passes me to someone else. Cleveland clinic did my laparoscopic surgery and I really felt good about them. They're really highly ranked in the US. Maybe I need to see a urologist, but Cleveland clinic is so far for me to go. I can't keep driving out there.

    Also I've been to pain management doctors who also wouldn't do anything without a diagnosis. I know with prescription drug addiction being such an issue they have restrictions. But I don't see why they don't just diagnose me with chronic pain if they can't find anything? When I ask this I'm labeled drug seeking.

  • Chronic pelvic pain is a diagnosis in its own right and is used both when a patient has no identifiable cause or a cause - my endo specialist often writes CPP in relation to the endo, adenomyosis and IC diagnoses, and then individually if referring to one of them. It's a bit like chasing your tail at times when no one listens and very often no one form of treatment will work on its own. It's more about trying to get the best out of treatment with specialists and topping this up with diet, lifestyle changes including gentle exercise such as yoga, mindfulness and stress reduction

    It maybe you haven't seen the right specialist just yet, what do you feel is causing your pain besides endometriosis?

  • I've had my laparoscopy and don't have endometriosis. At this point I have no idea what it's from. I know it's connected to my menstrual cycle, and bleeding so heavily for so long certainly doesn't help.

    I had so many doctors not willing to do the laparoscopy but I think they wouldn't diagnosed me with anything else because they thought it was endometriosis. Now that that's ruled out maybe I'll get diagnosed with chronic pain. Hopefully my follow up yields something to go on.

  • Good and bad from my follow up. I was diagnosed with pelvic congestion, which is basically like varicose veins in your pelvis. I don't know why they didn't tell me that after my surgery, I had to wait 3 weeks to find out.

    The doctor told me the only treatment for it was birth control. She prescribed me birth control and told me I need vigorous exercise, which is a joke. How am I supposed to exercise in so much pain? Also, I had already been on all the birth controls she suggested. None if them had helped. She just ended up prescribing one I've already been on. She refused to give me any pain meds. This all left me depressed and horribly hopeless.

    However, when I got home and looked it up I found a whole different story. Other treatments include meds to help shrink those veins, surgery to remove or tie them, embolism, and hysterectomy. Everything I read said you should see a vein specialist or interventional radiologist.

    Im afraid to be hopeful since my hopes have been dashed so many times before. But I finally have a diagnosis after over 2 years. And there's options.

  • Hey kiddo,

    Just gone through something similiar in brisbane.

    My left ovarian vein looks like it has been causing all the swelling and pain and as you have probably read it can spread to the other veins,including iliac vein.mine was only the one.

    I looked at all options,exhausting myself with all the reading.

    You have two options,insertion of coils in those veins to shut them off by a vascular specialist or gyny can do an ovarian vein ligation and shut any others off as well.i went for the gyny and had it done laproscopically with the vein clamped.it has worked for me.

    No need for hysto just yet mate,try these other two options first.

    Always hang onto the uterus if you can.

    And ditch that gp find a better and take back that control.

    You decide what option you want and you tell them what you want.

    Kind regards

    Rose

  • I suffered for years with varicose vein and swelling in the labia mate and i was very depressed about it.i never dreamed it cld be coming from the pelvis!

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