There is hope and life after endo

There is hope and life after endo

Hi

I just wanted to share my story with others to say it can get better

I had been suffering since 15 years old (now 41) and it wasn't until four years ago i was diagnosed properly ,when we moved house and changed my GP that it all got sorted out. I have had three children ,and had finally had enough of the pain and bleeding all the time, I decided myself I wanted a hystorectomy , this is when my new GP questioned my reasons for hystorectomy ,I explained and she said it sounded like endo and why hadn't I been treated sooner ! Well my shock at her actually knowing anything about it ! She refered me to guildford a doc Kent , he and his team was amazing , I had a lap to diagnose properly then found out how bad it was! My womb was stuck to bowel , my overlies we're like tennis balls and the endo was every where, I was in pain but they said I should have been doubled over with how bad it was inside. But after 20 + years you get used to dealing with the pain. Anyway I was on monthly zoladex to reduce it before I had a full complete hystorectomy and a part of my bowel removed , I was very scared as they did say I could end up with a bag . But it was a risk I was willing to take to live a pain free life again.

I was glad I did, they had a bowel Surgion as well as an endo Surgion and the opp was 4 hours long all done keyhole . And no bag ! I was relieved and elated and emotional after, the pain I used to have had gone the only pain I had after was from surgery ,

the after care was very poor on the ward in hospital, so got home as soon as I could, and I can see why more people die on the ward than in surgery that's for sure!!

It took me about five months to get back to normal and that was with good care at home from my husband, children and church friends .so if you do have surgery make sure you have people around you after. I am now on a very low does HRT as I'm high risk thrombosis it is a gel I rub in twice a day it's better that the pill for me, keeps the flushes away and my bone strong.thats the main thing when you have a forced menopause .

But I can honestly say I feel 99% better,I can do so much more now, I've had my family, I've suffered the pain, and now I can live my life , it still feels funny sometimes to wake up in the morning and not have any pain or a pool of blood on the bed!

My prayers are with all of you

Nikki

10 Replies

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  • Hi Nikki

    I'm glad that you finally put an end to all these hard years.

    I had also a very successful lap few months ago and no endo pain-all endo removed from the root, just post-op neurological pain that gets better everyday. :)

    I know what you mean about support, I couldnt do it without my family, husband and friends and believing that God will not leave you alone in such hard times.

    Wishing you all the best

    Jo x

  • Thank you for sharing your story. It's really good to read such a happy ending and not read '...and all I did was take these pills...and here is where to buy them.' There are so many heartbreaking stories about endo it's easy to lose hope.

    Hugs x

  • It's nice to hear that someone has had a happy ending after the hassle this disease causes us. I am 29, on my fourth injection of zoladex and very glad with the treatment so far, I haven't had the HRT but take calcium complement (Osteocare joints and bones). Exercise has helped since before my treatment started (why is it we get told we will start a course of medications but don't get an appointment or prescription till about a month later... rant over!) and up until now my mood is better, I am a lot more energetic and feel that I can manage quite differently in a great way. One thing I can share with you all is that wheat/gluten in your diet, has its repercussions whether you are having periods or not, I have no idea what the link is but hopefully one day I will be able to tell you. I am keen to do research and get answers as I think this condition needs a lot of looking into.

    Thanks again Nikki for sharing your story and for your prayers, God only knows how many of us are around!

  • So glad you have finally been treated, a wonderful story.Could you tell me what HRT gel rub you use as it might do for me, I am using a low dose herbal treatment at present but am concerned about bone health xx

  • I use sandrina gel it comes in sachets that are 1 gram or 0.5 gram , if you haven't had a hystorectomy then you will also need an injection with it I think just check with your GP.

  • Thank you for sharing your story. Like you, I have had endo since I was very young, finally got diagnosed in my late 20s and had radical resection of endo then endometrial ablation 4 years ago which completely stopped my periods and the pain.

    I started the menopause about 18 months ago and am on Premique, which apparently has kicked off the endo again. Its through my bowel, which is stuck to my womb and ovaries. I saw my surgeon today and he gave me 3 options - leave alone, come off HRT and take Zoladex for bone protection but suffer the menopause symptoms (I'm 44), or have the surgery to remove all womb, ovaries and part of bowel. The risk is 1 in 25 for a perforated bowel and risk of having a stoma, albeit temporary.

    Yours was obviously successful but could you give details about the surgery - how long you were in hospital, pain, recovery time etc. I have a young family and not sure which path to take really. I don't want to suffer the menopausal symptoms particularly. Am in Brighton and have an excellent surgeon.

    Thanks for your help and hope you remain pain-free.

    My 14 year old daughter now has symptoms and is going to have her 1st lap. I hope its not endo for her sake!

  • I'm sorry to hear it has come back. But glad you have a good surgion. I was in hospital for about four days at guildford, the opp took about 4 hours and I was on codeine and ibrophen when I came out.

    My consultant put me on zoladex for six months before the opp as this reduces the endo and makes the opp easier to perform. Recovery time is different for every one, I do have a high pain threshold but it still took me a good two weeks before I was walking about the house properly and then about three months before I tried going back to work, I'm a mobile hairdresser . The hystorectomy I recovered from quicker than the bowel resection, and I still sometimes need to take laxatives as constipation can be painful. It all depends on how much bowel they need to take and from where.

    I was also given two stents from my bladder to my kidneys, which stayed in for two weeks after the opp . That is to make sure the bladder tubes are not injured during the opp and if they are it gives them time to recover ( they were bloody uncomfortable!)

    Zoladex is not a permanent solution and it doesn't agree with everyone.

    As for your daughter I think it will be endo, as it is a hereditary condition my sister also had it, and my mother suffered without diagnosis.

    I would suggest you take her to see a pain management clinic. Also as she is so young the fewer meds she's on the better, yoga, Pilates and breathing exercise help with the pelvis area and pain control ifs he learns this now it will stay with her. Also make sure there is a teacher that is aware of her condition so she has someone there she can talk to.

    I also found switching to organic as much as poss and low wheat diet helped me when it was bad.

    Hope this helps and get back to me if you need more advice.

    Nikki

  • Thanks Nikki for your advice. I will definitely try the low wheat diet.

    Sarah

  • you are are lucky that you still managed to have children with endometriosis, Iv been trying for few years to have children, right now Im in my ealry 30's and been suffering with awful periods and stomach cramps for a many years, my pains were so bad that they made me feel like Im going to die but no one took my problem seriously i was just told to take pain killers by my GP, only this year I was diagnosed with endo, and by the time I had laparoscopy I had a really large cyst on my ovary which leaked and damaged my tubes. So uncompassionate are the hospital doctors these days that while I was in bed straight after surgery doctor came for 5 min to tell me that I wont be able to conceive naturally due to tubes being damaged by endo, I was in total shock as few months ago I had an HSG tests amd my tubes were fine and the hospital gave me clomid for one cycle, the scan after taking clomid showed a large cyst but I was made to wait few months for surgery and that delay in my surgery has messed up my chances of having children as my endo was quiet severe.

    I dont understand why doctors and consultants don't take endometriossi problem seriously, for me to be told I won't be able to conceive naturally was like a someone giving me a death sentence, all this happened due to delays at the hospital, in Aug I had HSG test and in December during operation they tested me again and told me my tubes were messed up. theres not much I can do to the hospital as my loss is most probably irreversible unless a miracle happens in my life, has anyone had miracles happening in their life after being told they won't be able to conceive naturally.

    please everyone out there if you have heavy periods with blood clots, bad stomach cramps, spotting or any other endometriosis symptoms don't let doctors ruin your life, and fight for your right to be diagnosed and treated at an early stage, its not normal to have pain on monthly basis, its better to have it treated earlier, I hope no one ever goes through my experience.

  • Just read your blog and had to tell you that I was told I would never have children because of my horrific endo. However miracles do happen and I had a little girl. Don't give up hope - it seems to me that the doctors really do not understand this condition.

    God bless you.

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