Hi, I am aged 31 suffering with endometriosis from a very young age.
I am looking into excision surgery but in two minds. Would really appreciate to hear from ladies who have had excision surgery & if it has helped them & improved their quality of life. Thank u xx
Hi, I have only been diagnosed 11months ago. I have stage 4 endo. I had my first lap for excision in august so far had not had any flare up since May after joining with a bsge centre at a hospital in east london. The surgeon was amazing, the stitches were very small and tidy and healed within 2 weeks. No infection. But only downfall was when j had my first period since the surgery it was soo painful I have never had any painful periods so this for me as a 30 years old AAA very hard to handle. They say the first period after lap is painful. So far I am ok, just been suffering from lower back pain. Everything else seems to be ok for now from the lower abdomen area. x
Hi brightlights88
Thank you so much for replying to my post x
I have suffered for so many years because of this horrid disease and feel like I have no choice but to go down the excision root to get my life back.
I was diagnosed by laparoscopy in 2012 & the endo was Lasered off but the symptoms returned shortly after. Do u have a name for this surgeon or where I can contact.
If u do not mind. Thank you for taking time out to respond to me, I really appreciate it.
Hi
No problem it's nice to have the endo family be there for one another.
I searched for my nearest bsge centre on the website, the reason why I had chosen to go ahead with Homerton hospital, Hackney, was the fact that when I looked into the hospital, they also have a pelvis pain clinic to support with the monthly flare up, the surgeon who will under take the excision surgery also support you through fertility treatment at their clinic when your ready to look into starting for baby etc.
The doctor is called Dr Barnick. it helps to have all these clinics under one hospital so they have your records etc. I am due to go in 3 weeks time for my follow up from laparoscopy I had.
You can go on the google search for bsge endometriosis centre site and put your post code in and see which ones closer to you,you can then click on the name and read up and see what team they have etc. Then go to your gp to refer you to your. chosen hospital. they say their might be 6months wait but in actual fact it's like a 4 weekz. Get them to book you the referral online through the gp portal. within 3 months of my consultation, mri scan, follow up of the results and then my excision surgery all within 4 months. Good luck,any questions let' me know. x
Thank you so much u have been great. I will look into it right away 🙂
X
Hi,
Excision surgery done by an endometriosis excision specialist is definitely the gold standard for endometriosis treatment. But please know that Beating endo requires a whole integrative approach.
So, apart from surgery, I advise that you look into your diet and make changes and see how they impact you. Replace processed sugar-filled foods, dairy, gluten with nutrient-dense, whole foods.
Try pelvic therapy or pelvic exercises, drink lots of water, look after your mental health and protect yourself from stress as much as possible. Try to reduce plastics (especially eating hot foods in them) because they contain hormone-disrupting chemicals... and so on.
I hope you get great relief after the surgery xxx
Hi endokicker1
Thank you for the info u have provided. I will look into diet changes etc
Really appreciate your help xx
I used choose and book to access a BSGE centre. Best thing I did.
I had a diagnostic laparoscopy and was diagnosed with Stage 4 Endometriosis: Deep Infiltrating Endometriosis. This laparoscopy was done by a general gynaecologist and she offered hysterectomy as a solution. Luckily I joined Facebook’s ‘Nancy’s Nook Endometriosis Education Group ‘ and did a lot of research and made the informed decision to get referred to a Nook Dr. My general gynaecologist was not trained enough to deal with ‘Excision’ of Endometriosis so asked her to refer me to a particular Nook surgeon nearest to me. I also asked my gp.
Obviously the severity of the findings of my laparoscopy made this straightforward.
A BSGE Endometriosis Specialist or Nook Dr is needed for excision as they have the training needed to do minimally invasive excision surgery. Ablation is just a bandaid solution to Endometriosis. Excision is the Gold Standard treatment.
Nancy’s Nook is not a Support Group or discussion group it is there to provide you with research files so you can empower yourself to ask the right questions and take control of the treatment path you want to go down. You have to answer 3 screening questions and you have a week to read the introductory files before you can ‘Like’ or ‘Comment’ on something which is not found in the research files.
What are your symptoms?
Hope this helps put you on the right track.
Hi 1DayEndoFree_1
Thank you for responding to my question u have been very helpful.
My lap in 2012 diagnosed me with endo on the pouch of douglas, the bowel & I cannot remember where else. During my period the back pain is so intense I cannot function and have had to leave work.
I am confined to my bedroom for 5 days each month and use a bottle water bottle & tablets to help.
Since my diagnosis in 2012 I have gone through a failed IVF & 3 miscarriages.
I want to be able to do normal things like go to work & not have to work my life around this horrid disease. I feel like I excision will be the only way to get that.
Thank u for responding to me. X
From the symptoms you’ve described and location this is Deep Infiltrating Endometriosis like I had. I had Endometriosis in the Pouch of Douglas, Bowel, endometrial nodule on the uterosacral ligament etc.
I too had excruciating dull aching pain in my lower back ( also down my right leg) which resulted in my taking 4/5 days off each month. I took the lowest dose codeine first but as it worsened had to get prescription dose codeine which didn’t really work either. Used two hot water bottles; one for my lower back abs one for my right leg. This helped a little but still the pain was unbelievable. I know what you are going through. I was also bed ridden as the pain was so bad I couldn’t even get out of bed.
I feel for you as you’ve been through so much with IVF (a couple of friends of mine went through it and said it was extremely painful) and miscarriages too.
This has probably been easier for me in this respect as I have never wanted children (due to personal reasons) and my husband has had children in a previous marriage so luckily there was no pressure there.
Have you been able to have children since?
I made the most of the time I was okay at work by working extra hard to make up for it. Social life was non existent as fatigue also plays a big part in Endometriosis too as you’d know.
What treatment, diagnostic procedures have you had since 2012?
I haven't had anything done endo wise since 2012.
Always worried about the scar tissue building up due to having surgeries so just been suffering.
Unfortunately my infertility case is quite complicated (immune system attacks on fetus) well thats what I know so far. So I havent tried after the third miscarriage as me and my husband split.
No children.
I had my 2nd laparoscopy in 2017 after my symptoms started to worsen and I got different symptoms also ie. lower back pain and leg pain. My general gynaecologist who conducted the Lap said I had extensive Endometriosis and signs of Adenomyosis. I wanted to know how extensive... how much the Endometriosis had spread so had a pelvic and abdominal
MRI done privately. If you do this you must make sure that the radiologist is experienced in identifying Endometriosis especially Deep Infiltrating Endometriosis (not all are).
Something else I learnt!
My Nook Dr has two specific radiologists he uses as he trusts them and knows they are experienced in its identification.
As for scar tissue/adhesions caused due to surgery ... experienced Endometriosis surgeons will minimise the risk of new adhesions using their preferred adhesion barriers; their most successful.
centerforendo.com/contempor...
Endometriosis can put a heavy strain on relationships as well as other conditions. I do hope you get some answers and help with your fertility
condition.
🙂
Thanks for all your help I really really appreciate it. U have alot of knowledge on endo.
I will start looking into the things u have mentioned x
Did u manage to get your surgery done? If yes have u found relief from this horrid disease x
Due to my worsening Endometriosis symptoms (Stage 4) and the concerns of it spreading further I updated my consultant quite regularly and one day I received a phone call saying there had been a cancellation and did I want the operation (I had so far been waiting 6 months) ..... shocked but relieved I said of course! Could have been waiting till January next year otherwise.
I had a Total Hysterectomy (for my Adenomyosis and Uterine Fibroids), Bilateral Salpingo Oopherectomy (for my bilateral Endometriomas, ovarian cancer risk and stop oestrogen production) and Excision surgery (extensive).
Had this done mid August. Recovery was slow at the start. Healing is different for every individual. Having problem with nerve damage/irritation/compression probably due to the extent of the major surgery. There is risk with any surgery as I knew. Almost coming to the end of 3 months post-op and thanks to my Pelvic Floor physiotherapist (private) I am seeing improvements. As for the Endometriosis symptoms... I obviously don’t have a period so no bleeding or period pain.... Yayyyy!! 😃
First couple of weeks after surgery I did have some lower back pain and leg pain but nothing like it since. I am however, experiencing surgical menopause which is something else altogether but coping okay.
Back to work next week....see how I go! Must remember to take it slow.
😬 🤞🤞🤞
Wow u have been through alot. Wishing you a good recovery and good luck with work too x
Yes. It can definitely improve your quality of life immensely, but it has to be carried out by a real specialist with top-notch training and a significant amount of experience. If you want the names of the most skilled and experienced excision surgeons working within the NHS, please PM me.
Thank you for response StefaniaJW. Names would be great thank u x
I'll PM me to be compliant to the privacy policy
Hi Lindle
Yes I am in the UK
It was in the pouch of Douglas and the bowel. Maybe other places but I cannot remember now.
It was a diagnostic lap to see why I have had such painful periods since they started when I was around 10/11.
During this lap they Lasered off what they could see. I was also diagnosed with PCOS at the same time x
I’d be interested in the names too , if that’s ok?
Yes of course I can give u the names StefabiaJW kindly sent to me
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