Endometriosis

Endometriosis

Hey ladies,

I am so glad I have found this page where I can connect with ladies who are suffering the same thing. My names Rose and Im 24. 7 years ago I got my first bouts of "IBS" I always had super heavy periods from the age of 12 when I got my period. I got diagnosed with IBS at 17 when my stomach would swell up to a horrendous size. I would find it would get worse around my period. Eventually things have gotten worse over time, I sometimes suffer with Dyspareunia and when it started to happen i thought it was normal and put it down to other reasons. Had a coil fitted 2 years ago but I had blood clotting, painful mini periods or bleeding, carried on having Dyspareunia (painful sex). Once I had the coil taken out after a year due to still having pain and wanting to regulate my body back to normal, things just got progressively worse. At first I thought it was just from the coil being removed but the pain has been excruciating, Im an athlete and coaching is my job but unfortunately, I was unable to work, the bleeding was so heavy and so painful I would be bed bound. I first started to get extremely low blood pressure, dizziness and it eventually led to me almost passing out, I would then be bed bound for 2-3 days. I saw a gynecologist in September 2016 and he diagnosed me with Endometriosis but just gave me the contraceptive pill to subside the pain. In fact it got worse, I was unable to work properly the pain was so severe. I returned home from the middle east 3 months ago in the hope to get booked in for a Laparoscopy appointment, I've been pestering my consultant but i'm not getting things really done and appointments are 12-16 weeks apart at times. I've been struggling really badly, since the end of January I have had 3 periods and pain and dull aching in between, my periods are so heavy I can barely leave the house and the pre-period faze is horrendous as I feel low energy, dizzy, light headed, faint and just exhausted and once im on its a combination of all. I've been getting issues with my bowls not just the obvious 6 month pregnant look but rectal bleeding and lose bowls, I did have a flexible sigmoidoscopy but luckily it came up clear but I am so worried the endometriosis is on my bowls and my diaphram as i get pain at the base of my chest (top of the stomach) now almost everyday when i'm due or on my period. I just want to know how you ladies cope with it, I'm young but I will be honest when it gets so bad I have had suicidal thoughts. It gets so bad at night that i think the worst. I've called begin for help to my consultant but they just tell me i have to follow procedure and that appointment is now not until June. I would love to hear from someone on how I can get through this and if they know a doctor in the UK I can possibly pay to give me a full diagnosis and a solution.

5 Replies

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  • Hi Rose, I'm so sorry your going through this, I have been through similar issues with what your going through now, I was diagnosed with stage 4 endometriosis & a bicential uterus back in May 2015, the diagnosis took forever due to the waiting times on the NHS & was only properly diagnosed once I was on the operating table, my reproductive organs are now permabtky damaged & my husband & I will be starting IVF cone the summer as I can never fall pregnant naturally.

    An added issue I now have is rectal bleeding, this has over taken my life now as I can now no longer work due to the fact I'm am housebound every fortnight, I've also had a endoscopy & flexible sigmoidoscopy & they found nothing to be wrong apart from pockets of diviticultis, it is debilatating and has taken over my life now, unfortunately I can't hold a job down as I have to be off work every two weeks, I feel for you as I know what you are going through.

  • Hey there Rose! 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!

  • I'm replying to my own comment HAAAA ... well what i wanted to add was i have literally no pain now and I had it very severe like ending up in a&e painkillers not working despite taking the full dose regularly etc. so what i wanted to say is yes my recommendation is not to be taken lightly ;) <3

  • Hi rose sorry short reply but u can go private for this make sure get site of bsge centre and also in interim private doc may be able to give u an injection called zolodex or prostrap they kind of put u in a mini menopause that is reversible once wears off. Taking ordinary contraceptive pill never helped me but this stuff did it shuts down ovaries I need to take a little hrt with it or you will suffer with night sweats and emotion problems but just google endo specialist and make appointment to see one and say I want this drug while your waiting for diagnostic lap or treatment it's a bit of breathing space for u hopefully and will stop or lessen the pain. 😉 x

  • I had prostrap a couple of times they helped more than contraceptive pills they put you on they are a complete waste of time.

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