myendojourney

Living with Endometriosis – Welcome to my blog


Welcome to my blog

Following a diagnosis of stage IV Endometriosis in 2009 after 19 years of pain, horrendous periods, countless trips to the GP, being passed between consultants, 7 miscarriages, fertility tests and nearly losing everything that meant something to me.  I finally faced the ultimate sacrifice; loosing my womanhood.

In March 2011 I underwent I was prepared to have a TAH-BSO  or in full a Total abdominal hysterectomy-bilateral salpingo-oophorectomy, having also been preped for a possible bowel resection.  I didn’t need a stoma or a colostomy bag, for which I had been prepared.  To the right of this post you will see a link ‘Recent posts to this site’ they go back right to before the operation.

Some blogs are me at my rawest when there has been no hiding from the emotional and physical loss.  I have tried to be as honest and open as possible. A living record of what it has been like for me throughout this whole experience.

The idea for this blog came from the fact that I had begun communicating with other ladies who have endometriosis who like me were struggling to find a single source that could easily answer their questions.  You will find that there are lots of websites with information on about Endometriosis and what treatment you may or may not be offered. When I knew I was having a hysterectomy and possible bowel resection I embarked on a mission to read as much as I could about what I was about to go through , what was missing was a honest account of what another woman has experienced. My hysterectomy &  bowel resect was on March 1st 2011, I started writing an online blog 4 days before.

So much of what I was reading about having a hysterectomy was accompanied by doom and gloom – yet when I spoke to others who have experienced an early hysterectomy either because of cancer, endo or other horrid medical issues most said it was the best thing they have ever done.

I will post here frequently to give others an honest realistic account of what my endo journey and my recovery from major surgery as a way of helping others who may experience similar and likewise if you have any questions please send them in via email,  if I can I will answer them on the blog as soon as I can. Since the blogs launch I have spoken with over 20 ladies who have had questions or just needed to blub with someone who understood how lonely this place is.

Regards

Endosister Liz

xxxxxxx

49 Responses to "Living with Endometriosis – Welcome to my blog"

So true about the doom and gloom. I had “everything out” at 33 following years of late-diagnosed endo and poly-cystic ovaries. Sure it took a while to bounce back from the abdominal surgery, but the sheer joy of not being in constant discomfort/pain overrode the disappointment of not being able to have children of my own. Eight stepchildren later…

thank you Cecilia for your comment, its great to hear that you are doing well, and that you now have 8 step children – am sure that this keeps you on your toes – thanks for reading my blog xxx

I agree, although I was always wanted children, electing to have hysterectomy at 28 was the best decision I made. I am now no longer restricted to staying in due to pain and heavy bleeding. My mood is more rational on the whole, and I have been able to move on with my life. Whilst I realise that people need to offload and talk about the doom and gloom, it is also great to share the positive side to something so life changing. I will endeavour to follow this blog as regually as I can. Well done you -Elizabet

To all the ladies who read this Blog. Know rhat things can and do get better, and there are a lot of people out there who do have happy stories to share. xx

hello and thank you for stopping by – it is so great to know that things can and do get better, am sure for many reading my blog (and for myself too) this will give comfort and a sense of purpose to this pathway

Kind regards
Endosister Liz

Hi Rachel,
thanks so much for sharing a positive point of view regarding having a hysterectomy. I was starting to panic, that no good could come of having one! its nice to hear a good ending for a change.
Fi

This disease! It robs of so many things! I had about 25 years before I finally found some relief, I know everyone’s journey is different. Mine was dark and long but I found some light. I wish the same for all women suffering with this.

hi Amaline , yes it is a thief alright, hope you are well and that you are enjoying what ever life has in store for you
thanks for stopping by
xx

Thank you to sharing helpful information

Outstanding post, I believe people should get a lot from this blog is really user friendly. And this article is great I’m likely to link this on my site and refer this to others.

i too have to have a total hystertomy due to endo and i too have to be cut i am on the list i was wondering what help i will need at home i live alone and am scared

hi samanthan thanks for your message, try and be as prepared as you possibly can. Do you know whether they are going to give you a vertical or horizontal incision?

The Hysterectomy Association has a great source of information to help you prepare for your op. Top tips like cooking meals and freezing them so they only have to be reheated. Putting everything at a low level so you don’t have to reach or lift anything. I bought an abdominal support band from the website which helped my tummy to feel supported in the early days.

You are bound to be scared but try to relax and consider what you can do before hand to help aid your recovery. Have you any family or close friends near by that might be able to put a rota together to help give you support whilst you recover – especially in the early days.

Please just ask if you want to know anymore
good luck
Endosister Liz
xx

after finding this site i am relieved to know things do work out 🙂 though i do feel scared but very blessed. Always had problems but was told it was ibs etc and made to believe i was making it all up. Went to gp last year about lower back problem and severe pain in my legs to discover I have severe endo quite a surprise. Surgeon told me yesterday he is very surprised i have a 4 year old son, we were also as he was not planned. I am very blessed as i have a 19 year old a 14 year old and our little man. Now I understand why we had the age gap between our children.

The surgeon has said i have 1 tube and ovary left as the other has been obliterated but the ones left have fused to my bowel as has my uterus. He also believes my bladder is affected, said I will prob need temp stoma and not sure about bladder yet and yeap complete hystorectomy. My question is he said I need 10 years HRT – does this trigger endo again though ovary will be removed?

Again I am scared but relieved and very blessed to have my children, there is hope with endo but am certainly looking forward to this pain being over after suffering years. Hopefully for all of us there are happy endings xx

Tracy

Hi Tracy thanks so much for your comment. It is so very much appreciated.
Re your question about HRT. There is only one ‘safe’ HRT its called Livial or Tiblone (think thats a correct spelling) this is deemed safe for endometriosis sufferers. Livial tablets contain the active ingredient tibolone, which is a synthetic steroid medicine used for hormone replacement therapy (HRT). It mimics the activity of the female sex hormones in the body (google for additional information or discuss with your GP or Gynecologist)

From my experience if they need to prep you for a stoma they will take you through stage by stage what maybe expected – they do like to prepare you for the worse case scenario. Fingers crossed for you that it all goes to plan, and even if you do get a stoma for a short time that the reversal is a very simple procedure.

Tracy there is life on this side…. it might be different to the one you had planned but the life this side is certainly free in a way I have never experienced
If you want to ask anything at all please just message, good luck with your coming weeks and months xxx

Thank you for the reply 🙂 hopefully all will work out well.

Thank you for this blog. I am in the land of confusion with stage IV endo as well. It has been one crazy journey of misdiagnosis. I have already had a partial hysterectomy due to the endo inside my uterus (adneomyosis), but apparently the doctors tell me my Ovaries are still feeding the disease.

I did not really even realize I had it as I was able to have 3 children. I have had an endometrioma removed from my abdominal wall muscles that apparently settled and grew after a c-section unbeknownst to me until I was in great pain. Unfortunately this was misdiagnosed and I had a huge abdominal resection that was likely not necessary including major plastic surgery. And here I am a year later with new very unpleasant symptoms and deep rectal endo. I am afraid, and both opinions I have gotten recommend the eventual removal of ovaries/cervix. They even talked about cancer risks being higher if I go into menopause with my ovaries. I am so reluctant to go into a complete hyster and go into menopause at a young age, so this blog is so helpful! I have just lost faith with doctors on this disease due to the misdiagnosis along the way for years!- I just do not know if more surgery is the answer as I have had so much already. I have a colonoscopy scheduled next month and hopefully will find out more then. My colorectal surgeon is hopeful. I just feel that I have it everywhere and that it has stolen my 30’s. My heart goes out to anyone suffering from this disease. I am so glad to know there is hope!-Thank you for reading.

I will add too that one doctor wants to do the oophorectomy/hysterectomy laparoscopically , and then the other doctor wants to do a horizontal incision in the same scar as my abdominal resection ( c section scar too). I do not know which way to go on that either. My partial hyster was done as a lap surgery. I have had a lot of abdominal surgery, so there are just so many hesitations.

oh Becko you have indeed had a rough time – apologies for the late reply a member of my family has been very poorly and I have been unable to update on the blog.

So many questions and so many decisions to make . Ovaries can feed endometriosis. and as you have discovered to your peril Endo is often mis diagnosed and this is to the detriment of the sufferer.

I wish you luck with your forthcoming colonoscopy and really hope that you get some peace from this disease

please message me at any time
Endosister Liz xxxx

Hi Becko, Wow, you must be well over all the confusion from the misdiagonsis along your journey. I have an appointment with my Endo specialist in a couple of weeks time to discuss my hysterectomy options. I have stage IV endo along with PCOS. I had been going along “okay” for the past year, but in the past 4 -6 weeks my pain is back. I’m “sick of being sick”, and feel that my early 30’s were stolen from me and my poor ever supportive hubby. I just turned 36, and want the pain to stop already! I don’t have children, and although it was probably on my ‘wish list’ when I was in my early 20’s, its not really the be all and end all of my life if we don’t have kids. I have two lovely niece’s, and i’m sure my little sister and her man will provide more nieces/nephews for me to spoil rotten, when its their time to have kids. I am in a land of complete confusion re the hysterectomy, i initially thought that if you had a partial then that would be it, pain all gone. But now that I fully realise what triggers the symptoms etc, namely your ovaries still feeding “endo” even after your uterous is gone, I’m thinking, gee – should I just have the full hysterectomy!? BUT then you are forced into menopause, in my case very early menopause, which has its own set of issues and symptoms to deal with! MAN! It sucks to be a chick doesn’t it!?

hi Fiona
gosh yes it is a mindfield of questions and deliberations – no one knows what is the best for us, all you can do is the best for you based on the information you have at the time
please ask away if you have any questions xx

hi all,
have finally got my date for full hysterectomy July 4th 2012!!!! also will have colorectal surgeon as been told bowel twisted and fused to uterus, ovary an fallopian may need colostomy bag? also bladder been pulled into the awful disabling endo fest so need some surgery on that to get rid of the endo, been told will need a bladder stent for definate. Really weird as part of me is so scared but the biggest part says ‘yes, bring it on’, hopefully eventually pain free!!! and one day return to the gym and run with my 4 yr old in the park. 🙂 question is does anyone know the estimated recovery – return to work after operation? I dont trust dr’s as they are likely to say take 2 weeks off and your be fine 😉 I would like the approx only so I can give my boss the likely lengh of time so they can get the shifts covered. to the above ladies, everything can be turned into a positive even menopause – no more pain, no more periods and if full hyst no more cervical smear tests which are excruciatingly painful….. life throws some tough times at us woman and we go through a lot but it makes us stronger and more resiliant, all the best with your choices and thats the beauty of it, they are YOUR chioces xx
many thanks,

I see you just had your surgery; I am very interested to read how it went and what your experience is/was. I am scheduled for my hysterectomy in a little over 3 weeks- 31 July 12. I had open abdominal surgery for endo 14 years ago, and my recovery took about 4 weeks, and even then, I was slow moving. I stand for a living, so that may have something to do with it. During that surgery, my right ovary and fallopian were removed as they were encased in a grapefruit-sized mass of endo.

4 years ago, I had laproscopic surgery for more endo and a necrotic growth on my bowel. At that time, my surgeon obseverved that my uterus has adhered to my bowel with adhesions/scar tissue. Now with the total hysterectomy (along w/ remaining ovary & fallopian), my main concern is the bowel interaction. While my Dr. doesn’t anticipate the need for colostomy bag, I am very fearful of it.. There will be a gyno-oncologist on-hand, assisting my Dr., as they’re more versed at dealing with complicated situations.

I hope you’re able to come back and post your experiences when you’re feeling better, and I’m sending healing vibrations your way

Hello my lovely
I am sorry I never saw your comment, how are you now

How did your surgery go

Much love x

Hi All,

Thought I would update, I am 8 days post Hysterectomy, firstly the surgeon was able to save my bowel without having to give me a stoma 🙂 YES!!!!!!
This is crazy, after only eight days after the operation it is the first time in years I have felt almost pain free, the hysterectomy seems to have been really worth going through at the moment. The surgical pain is actually less than the Endo pain……… I am still quite stunned with it all and now wish I had had this done years ago.

Take care and thank you for your support x

Hi just wondered how you are getting on ?

Hi,
Thanks Lesley, all still going really well so glad i had the hysterectomy life is finally good the hrt is great as well thankfully no side effects. Got to go back to colon surgeon at end of sept though as still having problems which were thought to be with womb etc being fused to bowel etc but seems still issues as have had 3rd lot of antibiotics and they have finally worked as at one point ended up at the gp’s at 2.30 in the morning due to the pain and fever. So pleased not to have the endo on top.

I hope you are good ? x

Excited (but sorry) to hear your story! Always praying for my endo sisters

Hi Liz,

I rang the endometriosis helpline this evening and was lucky enough to speak to you. I just wanted to say a huge thankyou for all your help and advice, and especially for sign posting me to this blog. I have a big decision to make tommorow wether to go ahead with a full hysterectomy, but your story and the stories of others have filled me with hope.

I will endevour to keep you all posted,

Thankyou so much, Claire x

you are welcome Claire
have been thinking of you
how did you get on last week? xxx

Hi Liz,

Sorry for the late reply!!! Yes I have decided to go ahead with with a full hysterectomy/ possible bowel re-section, they are going to remove everything apart from my right ovary (Then hopefully won’t need any HRT) Heard from the hospital on Friday and i’m booked in for early next year..

So hopefully there will be and end to years of pain & suffering.

Claire xxx

Hi there,
I am booked in for this on 04th December.
How long were you in hospital for?
I have opted not to have HRT after even though I am only 35 because my consultant has advised that there is more change of the endo returning.xxx

Hi Kelly
Am sorry I never saw your comment

How are you now

Hi Claire,
Not sure of all your circumstances, but have just come through the other side of what seems to be a similar situation as you.
womb etc were all fused to bowel due to endo was in terrible pain for a few years told needed radical hysterectomy and possible bowel resection.
Really feel for you due to the anxiety of having the operation, but once its is over and things have settled down you will feel like a new woman and that life is great again! Since the operation my life has changed majorly for the better and this should happen for you to x I wounder now why it took me so long to have it done as I am able to do so much now. This will hopefully be you next year!! 🙂 I was lucky as they saved my bowel without the resection and I hope this is also the case for you xx
Just one thing Claire maybe others on here could advice you as I am not sure but was told that by keeping ovary can keep the endo going?
Well hope it all goes well for you, and this time next year you should be having a full life again 🙂 xxx

Hi Tracy, thanks for your reply.

Yes this will be my third operation in almost 3 years, I have suffered immense pain for years now and have just had enough!! When I had my last operation I was in theatre for 7 hrs, as they were trying so prevent a bowel recsection, and preserve my bladder, however this time it’s come back worse than ever, and unfortunatly I have never been pain free for any longer than 3 months after any of my operations.

The idea behind leaving the ovary, is because as far as the surgeons can see there has never been a problem on that side. I have tried HRT in the past and have had a bad reaction to it, so hopefully by leaving the ovary in situ it will prevent me having to take this ( as i’m only 36). I have also been on Zoledex implants that long now I have had to have a bone density scan.

The last 5 years have been a nightmare with conflicting pieces of information along the way! It sounds like you are really enjoying life now Tracy, and I do hope that is me next year :-).
xxxx

Hi Claire sorry i have only just got your message, I hope the operation went well for you and you are now pain free ? xxx

Hi,

I have a quick question about your blog, would you mind emailing me when you get a chance?

Thanks,

Cameron

cameronvsj(at)gmail.com

Hi I have a message to email you?
How can I help

Thank you

Hey, I live with endo, adhesions and the complications that continue to happen. It’s good to connect with others. Here’s a link to my blog too, if that can be encouraging to you. http://learningrhythmsofgrace.wordpress.com/
Heather

thanks for sharing, am sure that for anyone who is or has been in our situation knowing that you arent on your own is so helpful.

Hope you are well

Just wondering if this blog is still used? Going thru endo afraid it is in my colon have so much pain in my rectum when I’m on my period did any 1 else feel this? They would like to do a hysterectomy but 1st put me on lepron 4 6 months to try to shrink adhesions…was diagnosed 7 years ago by laperoscopy going back 4 another in a month 2 c progression.

hello , am sorry for the delay, yes this is still live, have just been out of action. has it been confirmed that it is in your colon? Pain is often in that area but thankfully it is not always as severe as the pain. Good luck with your forthcoming laparoscopy would be happy to try and answer any questions if it would help x

hi,
please try not to worry to much, they are amazing at what they can do now, they give worse case then try their best to sort it all, i was told possible colostomy bag etc but they managed to save my colon and bladder 🙂 so they can really do amazing things now, the relief you will feel will be incredible, wish they had done mine earlier as have been pain free for a year now heaven.

Wow Tracy, what a fab post thank youso much for letting us know how you are
hope you are continuing to recover well
xxxxxxx

hi Nicole apologies for the late reply, I am still here, but life for me is different to the reality I knew
how are you doing?

Hi Liz, thank you so much for your support, I’ll get reading the blog :)xx

Take it easy Hayley and good luck with everything xxxxxxx

I enjoyed reading over your blog today. I’m sorry you’ve had to endure what you have experienced with endo. I have included your site on a list of blogs on my post UBIQUITOUS ENDOMETRIOSIS that you can find at the end: https://hysterectomy4dysmenorrhea.wordpress.com/2014/12/15/ubiquitous-endometriosis/

I wish you the best on your health! 🙂
Elizabetcetera

I am 41 years old, suffering from endometrioses for last 12 years. Finally it has come down to the doctors recommending Hystrectomy as the only option. I am scared and mentally not able to accept the loss of so many organs that just makes me a woman. There is also the danger of colon rapture during surgery as I have had a c-section as well as a Cystectomy previously and organs maybe to stick together due to endo. I am scared and wanting to escape the surgery. How bad is it the process and the recovery?

His a my am sorry I was away and I didn’t see your post
How are you?

Just remember once you have had the surgery you can’t have it again! Look at it as your endopendence and it’s the first day of you getting your life back in a new form

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Roses of Endometriosis

From the beginning right back to before my operation

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