Sooooo, once again I find myself awake, having a little tear up and struggling to sleep. It's funny really how I can sleep all day and can't stay awake to complete my day to day tasks but as soon as it hits 10pm, INSOMNIA suddenly exists.
I've been thinking recently on what to write on here and I have avoided it as times have been tough for me recently and the thought of this blog becoming a depressing wall of sadness just isn't me... especially after finding out some of the people that read this.
Back to me pondering about what to talk about... relationships, friendships and family seems to be a topic I haven't spoken about. So here it goes.
Family is so important to me, anyone who knows me knows that I love my family beyond imaginable and that they've been nothing but supportive through my journey so far, aswell as friends, I have a collection of close friends who will do anything to try and make me feel better. Relationships, I mean they don't always work out but everyone I've dated has really been supportive when we were together. Everyone around me loves and cares about me so much and I should feel privileged.. lucky to have so many caring loved ones... right?
Wrong.
As most people who live with either a chronic or life long condition will probably be familiar with this... that you could have 10 million friends and family and you can still feel completely isolated. Isolated, a word that describes me perfectly at the moment. In no way am I physically or purposefully being isolated at all, I mean to most people that know me wouldn't think anything of it but I feel completely separate from everyone and everything. When there's something in your life (like endometriosis) that no one else can see, or feel or even notice, but it singles you out from everyone at the same time, I think its very easy to feel alone.
And when it comes to family and friends (the ones that love you so dearly) you cant help but conceal things from them because you couldn't care hurting them and 9 times out of 10, they just don't know what to say.
But I would like to say, if you have a condition and you're reading this, speak to someone, anyone, it WILL make you feel better, I promise. And if you're reading this and you know someone with a condition, ask them "how are you dong, seriously?" and don't ask it half heartedly, put it out there that they can speak to you, it'll make a massive difference.
Thank you family, thank you friends, I don't always appreciate you but I don't know what id do if you weren't around!
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ReplyDeleteAm pela, thanks to Dr Osaze who cured me of fallopian tube blockage and fibroid with his herbal tuber cleanser. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
Deletedrosaze39@gmail.com or call him on +2347089275769
Am Hellen, thanks to Dr oniha who cured me of fallopian tube blockage and fibroid with his herbal tuber cleanser. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr ONIHA's recommendation onLine,of how he has helped numerous of childless couples to have children with the help of his wonderful herbal medication, and I contacted him. And he administered his herbs on me.within the space of two months, i became pregnant, I now have a child I can call my own. In case you want to contact him for a similar problem, or all other infertilty issues, you can reach him through his email:
DeleteDRONIHASPELL@YAHOO.COM or call him on +2347089275769
thankes to Dr oniha, who cured me of fallopian tube blockage and fibroid. i married for over eight years wthout a child of my own. because of the problem with my fallopian tubbe and fibroid, until i came in conntact with Dr oniha's testimony and recommendations online, on how he has cured and healed so many people of the same illment, and i decided to contact him, and he administered his medicatons on me, and i became pregnant in two monnths. incasse you wannt to reach him for a similar problem, yoou can call or whatsap him on +2347089275769 or email: dronihaspell@yahoo.com
DeleteBlogger kat said...
ReplyDeleteRead the article on the BBC website, I am a lot older than you but suffer from adenoymisis ( a form of endo but confined to the womb).My heart goes out to you having to deal with this so young, keep reaching out and surround yourself with understanding people. I do not have answers I am still struggling, but try and take care of yourself the best you can.
I have found a combination of meds, eating well and regular exercise, helps to keep me sane and as healthy as can be whilst dealing with a chronic condition!
6 September 2017 at 00:54
I first went to the doctor in 1986 when i was 22 with the pain. I had tolerated the bleeding and the cramps for years, but when I started a relationship the pain was affecting sex too (yeah,I never sought help for "just bleeding and pain" - but when It came to sex I had to do something :-) )
ReplyDeleteI had a hysterectomy in 2004.
That was when they decided to "do something" to stop my constant bleeding and collapsing with pain. They believed that hysterectomy would resolve it. It was only when I woke up they told me that the operation took three times longer than expected because of the endo they found. I had had two laparoscopies - nothing found. But boy when they actually went inside.... my womb was attached to my fallopian tubes, all of it together was stuck to my bowel and my bowel was just stuck, and my cervix was welded on. I had over 200 stitches inside. THe doctor came and said, "i don't know how you managed for so long in so much pain". I said, "I've been asking for help since 1986 - everyone said period pains".
It's not all bad. THe hysterectomy was the best thing ever - but during the years I looked for a diagnosis, I have had quiet spells, with minimum pain or fuss, and had two gorgeous kids, the pregnancies and breastfeeding time after were great! no symptoms.
But yes, Endo is a horrific thing. Not enough done or known about it - and to a lot of people it is "just period". Bleugh!
Keep on being positive! Getting it out there will help so many people.
I also just read the BBC article. I am 43 and I have been diagnosed with endometriosis and PCOS in 2011. After my 2nd laparascopy, 1 of my ovaries was taken because of severe adhesion, my ovary and colon were already attached to each other. In the operation I was placed in temporary menopause while recovering. After 9 months, menopause was over. 2 months after that I was back in the ER because of severe pain. The ER doctor suspected it could be my ovary. I visited my gyne afterwards and he confirmed that my endo and PCOS were back, huge cysts latched into my only ovary. He just asked me if I was still contemplating on having children. He suggested to just get rid of the ovary. I was not ready for menopause so I left the clinic with my progesterone prescription and hit google. I was convinced that there was something missing in my body that caused this problem.
ReplyDeleteAfter countless search. I stumbled into some lab results from a Japanese lab explaining what happens to female egg sacs during ovulation and what happens afterwards. They mentioned a method in an experiment that aided the proper bursting of the sacs. That was one of my problems, when I ovulated, the sacs grew and grew and never burst, thus the painful and huge cysts. They administered proteolytic enzymes to burst the sacs. Breakthrough! So next step was to find where these proteolytic enzymes come from. After one google search, lo and behold - papain from papaya, bromelain from pineapple and zingibain from ginger.
That was a EUREKA moment for me...
You see I am Asian and I moved to Europe almost 20 years ago. Since moving, I have of course abandoned most of my daily diet due to inavailability of products. I seldom ate these fruits/veggies since I moved. There it was, my body telling me to return to my roots.
I then searched for pills where I could get these enzymes. There were all kinds of brands offering each of the three. Then I saw a familiar brand - NOW. I went to the nearest health store and found only one type - NOW Chewable Papaya Enzyme. I immediately started my "treatment".
After 3 months, I went to the 1st annual routine checkup after my operation and there showed a clean ovary, as if nothing had happened 2 months prior. The doctor didn't even know I had a condition.
I read more about enzymes and I found out that the best way to take it was on an empty stomach, so that digestion won't eradicate it. In the beginning, I swallowed 3-4 chewables each night, with water so as not to trigger digestion. Later 2 or 3 seemed to do. These enzymes acted like vacuum cleaners of dead proteins in the body - perfect for adhesion from endo.
I also found articles saying that taking some kind of protease helped with the symptoms.
This is not a cure as I figured later when I paused in taking the enzyme. This solution alleviates my symptoms so I don't have to go to the ER for excruciating pain nor take the birth control pill and added BONUS - I get to keep my remaining ovary until I eventually go into menopause. It has been 4 years since my last trip to the ER.
I was desperate to keep my ovary and this is what has helped me these 4 years.
I wish you the best of luck!
Like the others I read the story on BBC, I have endo too i have suffered since in was a teen like you.unfortuatly i was not taken seriously till i was in my 20's. I have had 5 laproscopies all of which have seen endo removed and last year my consultant said i would become a professional patient coming back each year for a lap to remove the regrowth of endo. He said it was time for more radical intervention.
ReplyDeleteZolodex - an implant that mimics menopause, if i had no pain whilst using it the i had a 90% chance of hysterectomy with removal of ovaries working.
Unfortunately i had a servers reaction mentally to the zolodex with some very dark emotional moments ( my partner and family got me through along with a great mental health team.) I had no pain during treatment so survey was booked. I was so scared to have the ovaries removed through fear of the same symptoms occurring. This reduced my chance of no pain post surgery to 50% and guess what surgery had no effect.
While some days i still lay in bed, i still go out i have an amazing partner and four beautiful children. End I sucks but its the ones you share it with who get you through
Listen yo your body rest when needed and party on the good days, endo always comes at the most dissapointing moments like birthday or planned events. I try to plan for if it does so i can still enjoy the event, always have pain killers and a stick on heat pad in my bag. If its particularly bad day then i go for as long and my body will allow me.
Just know you are not alone and when you feel isolated just remember there are so many of us out there walking in our end I shoes everyday x
If person tell you 5 times that everything will be ok and it's not why do you still belive him? Just get some qualified gynecologist consultation. We can arrange if you want. http://medrefund.co.uk/en/treatment/gynecology-treatment-abroad/endometriosis-treatment-private-clinic/
DeleteSo sorry you are going through this.
ReplyDeleteMy wife (who is 43 now) has a story much like yours. Daily pain for many years, lots of doctors. Finally though we received a shocking diagnosis as to the cause of her ailments: it was Lyme, Borrelia and Babeosis - basically three tick borne diseases - which had been hiding out in her body and causing her endometriosis and many other issues.
Not to say this is the cause in your case, but please research the link between these diseases and endo - you may find a personal path of healing. I recommend "DNAConnexions.com" if you think you have been exposed, its the best test out there (other tests are highly inaccurate).
Good luck to you!
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ReplyDeleteEndometriosis treatment cuts treatment times from eight years to eight weeks
ReplyDeleteNews release – xx February, 2017
The developers of an innovative treatment option are calling for better awareness of laparoscopic helium ablation,
. Most women with the condition are aged between 15 and 40, and there are wide range of symptoms identified by the NHS, sufferers can experience:
• Painful or heavy periods
• Extreme pain in the lower abdomen
• Pain during and after sex
• Difficulty in conceiving
• Discomfort when going to the toilet
• Persistent exhaustion and tiredness
At present the most common treatment for the endometriosis is medication, including painkillers, however the long term use of pharmaceuticals can cause many undesirable side effects. This treatment path can last years, will likely only mask the symptoms and during the period of treatment, the condition can also potentially spread to other internal organs.
Laparoscopic helium ablation (LHA) is one type of treatment that although available on the NHS, is still relatively unknown. The technique, which is administered by the ‘Helica’ instrument, has been used for almost 20 years, has been extensively tested and has been declared safe by the National Institute for Health and Care Excellence (NICE). It has been used for around 50,000 operations with a notable success rate, completing curing endometriosis in many cases { LHA involves an early reference from a GP for a diagnostic laparoscopy to identify the problem and its location, which could be endometriosis at stage one or two,
LHA works by using very low electrical power combined with helium to produce a plasma beam that emanates from the tip of a sterile plastic probe. The Helica was developed due to the opinion of many surgeons who believe that the lower the power of the instrument, the more control they have, and thus the safer the instrument.
The advantages of this treatment include rapid relief from symptoms and increased possibility of conception. LHA also importantly avoids:
• The average eight years of medication
• The potential for the condition to spread
• Side effects of the medication
• The misery and distress of persistent symptoms
• Potential infertility
Currently, NHS regions throughout the UK do not have a consistent approach to using the Helica. Some have established treatment routes for using LHA and demonstrable evidence to show that patients have been cured, whilst other regions turn straight to medication as the primary method of treatment and do not offer LHA.
“First and foremost, the most important thing is to be aware of the symptoms and to visit your GP if you are presenting any of these symptoms. Key to avoiding the medicinal treatment route, which can be stressful, draining and won’t work for everyone, is early diagnosis.
“Laparoscopic helium ablation will likely be unknown to most sufferers, however it is one treatment path which could improve symptoms and cut diagnosis and treatment times Years of suffering can be reduced to weeks, which would be hugely welcome news to women with the condition.”
The helica procedure is available in many but not all regions
For more information see www.helica.co.uk
My friend Jenelle LeMoine cured her Endometriosis with natural protocols. Look her up on Social Media I'm sure she'd be delighted to share her story with you. Good Luck :-)
ReplyDeleteMy daughter has endo. As long as she takes endovan she does not suffer. It took a few months for endovan to dissolve all the fibroids, but it did dissolve them. She also gave it to others. Their tumors/cysts dissolved, and their pain went away. Endovan.com
ReplyDeleteHard to hear stories like your, but believe me I hear similar to yours almost every day. Almost every day we have client who have endo and "lovely" NHS just give pills and thats it.
ReplyDeleteIf NHS tells you that everything is ok, have some concern cause 8 of 10 our patients where told the same. And for some it was cause of infertility and miscarriages. Just have scan in private clinic and go abroad for surgery http://medrefund.co.uk/en/treatment/gynecology-treatment-abroad/endometriosis-treatment-private-clinic/
I'll have to split this over a number of posts, thers a 4096 char limit !
ReplyDeleteGah.... This stupid illness just goes on and on despite it often being cureable/alleviated.
I get bored typing this into blogs and facebook !
Does any of this sound familiar ?
Menorraghia , ( heavy bleeding ), a lot of pain, endometriomas, 'red hot poker up the arse' type pain, sore breasts/FBD, PMS, infetility, carotanemia, short cycles and on and on.
I'll cut to the chase.
in many cases, all these issues have one root cause... The thyroid.
(really).
Before anyone says 'But i've had my TSH blood test and they say its fine' - the TSH blood test is almost entirely useless in most cases. They thyroid is a complicated beast and just because you seemingly have 'normal' levels of TSH it certainly _doesn't_ mean everything else is working.
Briefly....
Due to many things that can and do affect the thyroid ( iodine inadequacies caused by lack in diet, or iodine receptors being blocked by chlorine (in drinking water, but worse , in shower steam, bromine in fire retardants and fluoride in toothpaste and drinking water - or sometimes an auto immune disease usually caused by insufficient stomach acid not breaking down wheat and gluten (which ends up with the body attacking (accidentally) the thyroid due to foreign proteins in the blood) - Many do not produce adequate thyroid hormone. Without Adequate thyroid hormone you can not produce adequate progesterone. Without adequate progesterone you become estrogen dominant - which causes all these problems.
This is why some people say 'its the liver' (the liver is suppressed by estrogen and low thyroid) - which is why carotanemia is common in women with this condition. Excess estrogen (or to put it another way, inadequate progesterone) causes the cramping, the short cycles, the infertility, FBD etc. This is why for many women, natural progesterone cream alleviates many symptoms - but the root cause is _very_ often inadequate thyroid function.
I strongly urge you and other sufferers to google the following folks and things : Dr David Brownstein, Dr jorge flechas, Dr Sherry Tenpenny, Dr Abrams (the iodine project) and one of my favourite books on the subject (more generally dealing with the mass of sub clinical hypothyroidism that affects so many aspects of life, Type II hypothyroidism by Mark Starr.
How do i know so much about this ? because the woman i love went through it all. She was so in pain that she says she would have taken a hysterectomy if they'd offered it (she was probably too young at the time to be generally considered). They offered her an ablation, They wanted to do surgery to remove an endometrioma on her ovaries (which never get smaller according to the 'experts').
Long story short... We (after going vegan, doing supplements, seeing private specialists (many of whom are NHS and just as useless/in the dark), using Natural progesterone cream (which can be good, but why mess around dealing with the symptoms) - discovered Iodine (and its important partner Selenium) !
....continued... Very soon, her cycle length normalised (from a usual 21/22 days to an almost clockwork 28), Her periods were like night and day compared to the previous years, the pain... disappeared ! - very occassionally she'll tell me she has a niggle in her hip, but she often thinks it might just be an ache, unrelated to menstruation
DeleteSince discovering the Endometrioma - (this was just before she started iodine/selenium - she has yearly 'well woman' scans, which is how it was discovered) - it has got smaller every time she has a scan. Shes had about 6 since (by various methods (nhs ultrasound, private ultrasound, a scan by one of the country's best (apparently - they referred her when she told the hysteroligist(sp?) that she would not do surgery). It started around 7.5 - 8 cms and is now down in the 4 or 5s. We dont imagine it will disappear (its not like a normal cyst (which DO disappear with adequate iodine) - but we're really not at all worried about it now.
So... if you go to your doctor and they do a TSH test, they will likely tell you theres nothing wrong with your thyroid. This is by no means true. They used to diagnose hypothyroidism by _actual_ diagnosis and not a useless blood test (if you want to find out how pointless the TSH test is see stopthethyroidmadness.com ).
Get an old style mercury (or usually now alcohol thermometer - amazon, about 10 - 15 quid). Every morning (but specifically on day s 2 and 3 of your period (but best do it everyday) stick it in your armpit (not mouth, not the other end... must be armpit) for 10 minutes BEFORE you get out of bed or do anything. If you are consistently below 36.6 degress centigrade you _are_ hypothyroid.
100 years ago, the 'average' temperature was 36.7. We're all now so poisoned by chlorine/fluoride/bromine the 'average' has come done.
When my wife started , she was generally at around 35.8 degrees.
She's now often 36.6 - 37 degrees.
She's warm ( in a not unpleasant way) for the first time in her life (heat/cold intolerance is often one of the many possible symptoms of hypothyroidism).
Thyroid hormone is related to ATP/cell energy - ie powering cell mitochondria. All your mitochondria were in your mothers eggs before fertilisation. This is why often these problems get passed down the female line (and generally get worse for each generation).
anyway, i've rambled on too long. This is a fascinating subject - but more importantly, you _dont_ have to suffer.
Read up, google, buy some books and experiment (safely).
And if you do iodine, make sure you're also (and beforehand) taking selenium, which protects the thyroid from damage caused by excess iodine.
One final word of advice...
Under NO circumstances take the NHS' view as final (much as i value the NHS - and they mean well.) - on these issues, they'll either 'put you on the pill (if it helps, its a progesterone one (for all the reasons detailed above) - offer you an ablation (another awful sticking plaster just dealing with the symptoms and not the problem) - or a hysterectomy (BEST AVOIDED - you need your kit for later in life , your ovaries (the third largest iodine users (after your thyroid and breasts) - produce hormones you need ALL of your life (they'll tell you you dont need any of it after menopause - which is an ignorant lie (from the same people that gave women estrogen implants and increased their chances of cancer !).
Every medical professional we've spoken to (NHS and private, Heads of Department and apparently the most expert in the country) I've mentioned iodine. - They _DONT_ HAVE A CLUE. They'll pat you on the head, dismiss you and if you're lucky, send you home with a lolly pop. Maybe the next generation of doctors will be trained differently. I suspect they message might get through soon. But not yet.
Good luck to anyone suffering with these conditions. You CAN help yourself. The information is out there.
Correction. I think the average temp 100 years or so ago was 37 degrees, not 36.7.
DeleteSource (i think) Dr Broda Barnes ( also well worth a google). They've known about this for years. its staggering that so many women still suffer.
First, thank you for this.
DeleteI have long suspected that my thyroid was not producing the progesterone that I need to counterbalance the estrogen in my body. But then I thought, who am I to refute normal TSH test results. I take Terranova multi vitamins/nutrient that have both selenium and iodine but I only take 1 instead of the 2-3 recommended daily dosage.
I don't have the chlorine and bromine problem in the tap water, so that's not the reason. Wheat and gluten are also practically non-existent in my diet, so that's not it either. But of course like everybody else, I use fluoride.
I will take the recommended dosage of my vitamins and continue my dead-protein-cleaner papaya enzymes and see what happens.
Thank you again for taking the time to post here.
Hi, Just FYI: iodine supplements are great but often they are VERY low (measured in micrograms). The doses pushed by Dr Brownstein (and others) range in the 6 to 50 Milligrams / day level.
DeleteI wouldn't advise just jumping in with these levels - you need to work up to it and make sure you're already and continually using selenium. My wife is 5'2 and about 113 pounds and for a period of about 3 months was doing 50 mg/day. This is many many many times the RDA (which i think is about 150 micrograms).
Its safe but you have to be sensible, read up and monitor your results.
Good luck all !
One final word...if you suspect estrogen dominance, you can send away to various places (sorry , dont have a link - but available over the internet) for a hormone test. Depending on accuracy, you basically do a spit test either on a particular day of your cycle, or other tests you do a number of different days - you spit in a test tube, freeze it and then when done have a courier pick it up (its all organised on line) - and the lab will send you a detailed analysis of your hormone levels throughout the month (giving comparisons of you against 'the average'. The spit test is the most accurate (IIRC) . blood tests are normally worthless or very inaccurate.
DeleteThese tests are not terribly expensive and vital if you think that excess estrogen/low progesterone is the problem ( often (but not always) caused by low thyroid function! )
Thank you!
DeleteAm pela, thanks to Dr Osaze who cured me of fallopian tube blockage and fibroid with his herbal tuber cleanser. My marriage was on the verge of collapsing, because I was unable to bear a child for my husband. Until I came across Dr osaze's recommendation on line, and I contacted him. And he administered his herbs on me. I now have a child I can call my own. In case you want to contact him for a similar problem, or all other issues, you can reach him through his email:
ReplyDeletedrosaze39@gmail.com or call him on +2347089275769
DR ALONGE, I wish to appreciate you for sharing such a simple but comprehensive herbal medication to tackle this disease from the root. This is truly a valuable resource for all women suffering from fibroid. It's been almost 10 months since my doctor first diagnosed me with a large uterine fibroid. My doctor suggested that I will try watchful waiting but as the months went nothing has changed.
ReplyDeleteAs soon as I decided I'm going all the way and treat my fibroid, I ordered dr Alonge and the results as you already know were shocking to say the least. The ultrasound I took clearly showed my large fibroid had completely vanished.
I have even encouraged my "Doubting Thomas" friend to order it and read it too. To have so much good information in one tight package is an unbelievable value. I would encourage anyone suffering from uterine fibroid and/or any fertility issue to take advantage of Dr Alonge herbal medicine! you can contact him via WhatApp: +2347045719820 OREmail: therealalonge@gmail.com for more information