Looking for help understanding my symptoms?

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I'm currently waiting to see a Gynaecologist here on the UK - after YEARS of begging to see one given my terribly painful periods, bleeding between periods, pain after sex etc. I was given a 3 month course of injections to stop my periods and it was absolute bliss, they finished in Sept 2016 and since December 2016, everytime I get my period I feel nauseous, I have a loose bowel, I feel weak and dizzy. It started mainly on my periods but now it's all the time. I'm constantly feeling unwell, I've fainted a few times, I feel weak and sick, I have no appetite, I get full so quickly and I've lost a lot of weight unintentionally, it's like having a Flu for 3 months. I went to the doctors for tests because I was concerned, but all stool and urine samples were normal and blood tests were all normal too.

Is this common for people with endometriosis to have all this illness and fatigue all the time and slowly getting worse? Please help, I'm really scared.

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  • Posted

    Go see your gynecologist. Diarrhea can be an endo presentation. With me, at a certain point I awoke because I was passing about a cup of dark blood rectally. First time around that preceded the diarrhea. 30 years later, that happened after 2 months of diarrhea.

    Demand a laparoscopy and if it's endo, demand a plan.

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  • Posted

    HI Samantha,

    I can relate to the feeling weak, sick, loose stools and agonising pain which I've had since I was 13 and started my periods, I'm 33 and have had a baby 8yrs ago which my mum said would help my period pains but it didn't, they are now still painful but the pain has changed too. I've been bleeding for 2 weeks before my period for about 2yrs or so now and after the gp Doing an examination she said something looked odd so I was sent to a gynae, it was a cervical cyst which they were going to remove, due to the other symptoms I was getting I asked for an ovarian ultrasound and I had a 10cm cyst on my ovary. I had to have a laparoscopy to remove it and endometriosis was found, the cyst was actually an endemetrioma filled with blood. She said my endemtriisis wasn't that bad but I don't know how far she looked around as it was cyst removal surgery not investigative. To be honest she didn't reccomend any meds or birth control but I'm wondering if I should take some to control symptoms. I'm still bleeding 2 weeks a month and having pain way before period even starts.

    How old are you?

    Why have you stopped the medication? Was it depovera? That stopped my period years ago but affected my mood.

    I know you've probably googled your symptoms and have come across ovarian cancer but there really is hardly any risk with pre menapusal women. Try not to worry about that, it is super rare in women still having periods. It was a concern of mine to when they discovered my cyst and I had to have a test to measure ovarian cancer markers, mine was slightly raised but can be in women with endometriosis. But my womb sample and cysts was sent for pathology and it was fine.

    Unfortunately the only way to know if you have endo is have a laparoscopy, I'd ask for an ovarian scan too to rule out a cyst.

    Good luck.

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    • Posted

      I'm only 21. I'm due to see the gynae at the end of this month, I just feel so ill. I've not felt well for so long and I'm just at my wits end.

      I'm due in for a cervical screening too so ill have to book that and make sure everything there is okay. I'll tell my gynae about all my symptoms and see what he says, I definitely need a laparoscopy and an ultrasound. It should have been done ages ago.

      Thanks so much for your advice, I've been so scared and been winding myself up for ages now about it. Telling myself I'm dying and what not haha. It seems so silly but it is scary having all these symptoms and feeling so unwell and no doctor seems to be giving me any answers or solutions. Thank you smile

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    • Posted

      Hi again Samantha

      Of course you feel lousy! Folks who've never had diarrhea for extended periods can't comprehend just how debilitating that is, plus it makes.you feel awful all the time. Add in other symptoms and it's a wonderful we don't all pull out our hair.

      It's perfectly normal to wonder if you're dying when all this is going on. Doctors think we're all nuts for thinking that, but what they forget is that when they feel bad, they've got all this knowledge that instantly comes into play & which may give them an idea about what's wrong. So don't beat yourself up for being human.

      Let us know what happens.

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    • Posted

      Hi Samantha,

      You are very young making your ovarian cancer risk very low so dont stress about that.

      This is from a cancer website: Ovarian cancer is rare in women younger than 40. Most ovarian cancers develop after menopause. Half of all ovarian cancers are found in women 63 years of age or older.

      If your in alot of pain and having lots of diarrhea that maybe why you are losing weight. Stress of not feeling well and being anxious about whats wrong can also make you lose weight and feel more ill.

      Did your GP run an anemia and B12 test, if you ahve heavy periods you could be losing alot of iron whicch causes dizzyness, fainting, heart palps etc. B12 is also something that can make you unwell if you dont have enough of it and vit D. I have low blood pressure to which can cause unpleasant side effects.

      You definitely need to get a full work up and checked properly by a gynae as you cant go on feeling this ill. They need to check everything, put your mind at rest and give you a treatment plan. Can you go on birth control??

      Just be prepared to have to ask for the tests/solutions you want as they may not just offer them depending on what Dr you get. Write donwn you symptoms, the tests you want, the questions you have so you dont forget on the day.

      Good luck

       

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    • Posted

      Hey Charlotte, thank you so much for your kind words and advice, it really means a lot at this time. 

      The GP did stool samples, 24 hour urine collection test and a full blood count blood tests and everything came back normal, which makes me think it more than likely in a Gynae issue. The problem is where I live you see, I live on a remote island in scotland where specialists like gynaecologists, geneticists etc only make so many trips up to the island a year to deal with these matters. 

      I was last seen by my gynae in June when I was put on the 3 month course of gondotropin releasing hormone injections to stop my periods to see if all my symptoms (painful periods, cramping before periods, pain during sex, cystitis) went away in that time, which they did. A part from the menopausal symptoms i felt great haha. I was meant to be seen right after my injections finished but its taken them 6 months to get me an appointment, and its a completely new gynae! So frustrating. 

      I have a list of things written down for him when I go to see him on the 30th of this month. Including the diharrea, pain, flushing, palpitations etc. I should be sent for an ultrasound then for a laproscopy but how long that will take in the current NHS climate is a different question. Im just sick off feeling so ill. Im mentally and physically exhausted sad 

      I'm hoping I will get some answers and solutions when I see him so fingers crossed. I'll keep you updated and thank you again for your advice smile 

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    • Posted

      So I've seen Gynae and I've been put on a waiting list for urgent laparoscopy and ultra sound which is great. Unfortunately, she couldn't give me any treatments in the meantime because I don't have an actually diagnosis.

      I still feel absolutely horrendous. The cramping and diharrea is under control now with paracetamol and buscopan, but I still feel tired, sick, dizzy and everything I do takes so much effort. It's just like having a flu constantly sad

      I'm just having to rest when I'm not well and try to get stuff done when I am well. Hopefully after my scans and laparoscopy, I can get some sense. Just need this feeling ill all the time to go away.

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    • Posted

      Well thats great news that your getting reffered urgently, i cant imagine the ultrasound appointment will be too long but the laparoscopy as its surgery may be a bit longer. NHS referral times are max 18 weeks for non emergency so that should be the longest you have to wait, i would imagine less if she has reffered as urgent.

      Obviously you dont want to start any treatments until youve been seen but have you thought about birth control as a treatment? Ive heard the deprovera shot is good with endometriosis. The depo stopped my period completely, dont know if it stopped the endo as i havent used BC for 11years and my lap was only last year. I used to have depo due to extremely painful periods, my mum put me on it as about 13 or 14yrs old because of the pain and my moods!!

      I dont know what to suggest about not feeling well as your GP blood tests are ok however there is obviously alot more tests they can do if you dont feel better soon. Full blood count test doesnt mean they checked thyroid, vit d, vit b etc. If you still feel unwell then ask for these test to be done too. Perhaps in the meantime you can make sure you are eating nutrient dense food, getting some gentle exercise and resting when you feel you need it. You could try a mutlivitamin for extra support but you need it from food and sun for best results. Also try not to worry as that can have a negative impact on our physical wellbeing.

      Good luck and keep me posted on how things go and what they say at your appointment. Hopefully they can offer some good advice and get you on a regime that can slow the endo down and relive your symptoms.

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    • Posted

      Hi Samantha

      I agree about going back on some n 4th control during your wait. If the first gondotropin (sp?) treatment helped, why won't this gyn give you that again while you wait?

      Because you've had so much diarrhea,which is often a sym

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    • Posted

      Oops all the way around! I agree about going on some birth control ,,,

      Diarrhea is often a symptom of endo, and of course it is completely enervating. However you still have to be careful what you eat, no fats, not a lot of roughage. Dry toast or what we Americans call crackers or soda crackers. Are you still having discomfort with perhaps some nausea? We have a prescription drug here, zofran/generic ondansetron, which is phenomenal especially if you get the sublingual form. It does have a definite constipating effect, it really slows down the digestive system. Stops the abdominal discomfort &or pain. Saved me when endo came back when I was 54 as I again had several months of diarrhea. It was created to be an anti-vomiting drug for those of us who vomit up other anti-vomiting meds ,,, 'cause we've all got to be special somehow. It is fabulous.

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