Daily pain ,can't explain what's going on to me

My life has been turned into absolutely nightmare. Like most stories I have read , Im 38 years always suffered with the typical IBS symptoms for nearly 12 years. Until 2 month ago it started with constant lower back ache and groin pain, bloating crumps , nausea,constipation,diarrhoea , sometimes rectum pain ,during my period I'm in tears with heavy periods , I used to suffer from bad periods pain when I was young .So far I have been to AE 3 times in the last 5 weeks with pain, went trough all differential diagnosis and investigations which included KUB , vaginal ultrasound of ovaries and womb , CT scan abdo/chest/pelvis scan irrespectively and blood tests . They found fibroids but they do not think they are the cause for the pain but i have been referred to gynaecologist anyway appointment booked in May (earliest appointment they could find).but on my last AE visit I requested to see a Gynaecologist and I kind of suggest to the her ? Could it be endometriosis after I have read some stories on this forums which were quite similar to what I'm experiencing , she said it could be but could not confirm without laparotomy since nothing was picked on any of the investigations ,so I asked for coil fitted which I have had so far for week , no change in my symptoms yet , I have been off sick for 5 weeks from work I don't know what to do , very hard to explain to work or family especially the investigations are normal. I feel my Gp does not take me seriously, I can't keep going to AE , I'm on oramorph and heat rubs/pads . I can't take anti-inflammatory they irritates my stomach badly , I'm depressed , I can't wait for May , the pain is constant every day .... . Any suggestions I'm on my wits end.

7 Replies

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  • H Thelma, sorry to hear what happening. It's a very scary time before you get proper treatment.

    Firstly you need proper painkillers, you need naproxen and tramadol for very bad days.

    You also need a referral to a specialist. Normal ultrasound scans can't really see much, which is why you are not getting anywhere. Look at lindels posts about accredited centres. A normal gynae/GP really don't have the specialist knowledge.

    It sounds as if you might have endo in your pouch of Douglas (the bit between your bum and vagina). In the meantime, watch your diet. Gluten and processed food, sugar, alcohol will make you feel worse. When I have had bad tummy problems I make soups with ginger and tumeric in them. They are antiflamatories. It will help with going to the loo etc.

    Make sure you get a referral, you will probably need a surgery but afterwards you will feel better. I was in constant pain and couldn't sleep. Now I only have painkillers occasionally.

    Best wishes xx

  • It explains why I always felt bad on glutten foods, wine etc although I got tested not having intolerance/allergy . Thank you very helpful x

  • I'll reply with what i replied to someone else with please take what you want from it: Hey there! I'm Fawziya 22 and have always had endo since I started my period at 14. my situation is similar to yours. i also have really bad circulation in my legs as well as really bad anxiety being bi polar etc. I could add more but I'll get to how I personally manage it at the moment. I've always been ill since young and when I reached my teens I eventually gave up on conventional "cures" or drugs. instead I use holistic methods. from what I have read surgeries the pill and other drugs or contraceptives don't have a long lasting effect. You HAVE to sort out you diet even if you use conventional medicine. If you are willing to pay you should really consider Traditional Chinese Medicine. I went to The Chinese Clinic in Balham SW London. I swear to you best decision i ever made, they gave me herbs acupunture and massage. It really helped with my anxiety pain and it wasn't instant but after going 3 times a week for a month i felt cured. They have a specialist there who specialises in fertility and women problems such as endo menstruation. What was surprising was the fact that instead of having to explain and feel crazy about what symptoms i have, they told me things that i didn't even think were related to my endo. If you are interested ill give you the contact details. Furthermore, if you decide to do acupuncture or not, for the "IBS" you get from the disease i would recommend a detox, like a juice fast then to slowly start eating healthy. Research the Anti-Oestrogen Diet- it as specifically designed for women like us. One of the causes of endo if not 'THE' cause is xynoestogens which are produced by the toxic lifestyle we have nowadays. Additionally, what instantly helped with the "Shocks" is replacing your pads or tampons with non-toxic ones i use brand called natracare you can find them in waitrose or online. Endo sufferers are always low in nutrients especially: Magnesium, B12, Vitamin D, Iron and Zinc. Not only should you incorporate foods rich in these nutrients you MUST take them in supplement form. Magnesium helps with the cramps, muscle pain, tiredness, fatigue, depression and also softens bowels. B12 in dosage of 1000 helps nerve pain and in some cases has cured endo because B12 aids in the regeneration of DNA cells. It also has helped cure some people's cancer. You should watch a documentary on youtube called ' Cancer the forbidden cure' worth the watch. As for the suicidal thoughts, Rose really, truly, i understand your pain. I am so sorry you have to go through what your going through, i have the dark thoughts regularly too. YOU ARE NOT CRAZY. YOU ARE NOT ALONE. YES YOU ARE YOUNG BUT ENDO DOESN'T DEFINE YOU. Think of the strength we have to endure such pain and still be alive. If ever you need to talk please feel free to message me. IT WILL get better! Don't believe the lies many doctors tell you! since you said you find it hard to manage, you should go to your gp not for the endo but for CBT (Therapy) it may help you manage your anxiety with not being able to cope. Also I get the feeing it distresses you a lot thinking about your image. Do you know how many women bloat even though they don't have endo?! You know Endo is often caused by stress as well and then when you get endo it causes hormonal imbalance resulting in more stress which in turn worsens the endo. stress also damages the liver and therefore you are unable to fight off the disease. Your body often can't manage stress when you have a lot of repressed emotions and conflicts. I really hope you are okay. Figure out what is really bothering you inside? What Can't you accept? If you hate something or feel hopeless try another method. Don't ever give up. With love your sista from anotha mista Fawziya xxx MWAH ....btw please excuse the grammar as I haven't slept and I couldn't be bothered to check let alone retype!

  • Thank you very informative , I feel encouraged x

  • Magnesium in supplement form helps with any muscle cramping even if you don't have endo <3

  • I agree with Starsailor & Casper. I have been through exactly the same as yourself. Signed off work end of '15 as daily pain with all the same symptoms. Diagnosed Feb 16 with severe endo.. Excision of RV, bowel shave, cystectomy.. and general removal of widespread endo everywhere else in pelvis by bsge surgeon. Now 5wks post op and feeling a lot better but still having symptoms. Hoping just surgical healing still.. Fingers crossed. Make sure your referred to bsge centre, then requested MRI. It showed up my Endo as quite deep plus Adenomyosis. Try diet and supplements.. Epsom salts help and Castor oil pack. Let me know how your getting on. It certainly can be a very scary journey and very depressing. Try and be kind to yourself and rest a lot. Best of luck.. Keep referring back to dr to try n speed up consultation too. My thoughts are with you xx

  • Ask to be referred to a specialist endo BSGE centre. If the hormone treatment and diet changes do not work and you need more investigation then you do not want a laparotomy ( open surgery) you should have a diagnostic laparoscopy ( key hole version) by a endo specialist as general gynaes often fail to spot the disease and do not always treat it correctly. bsge.org.uk/centre/

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