Surgery and Private care

[cikimac]

Good morning everyone!

So will try and keep this short & sweet.

Monday I finally saw my gynaecologist. I’ve been put down as a Cat 1 for surgery which means it’s urgent but due to Covid 19, urgent doesn’t exist. We are looking at potentially another year of waiting. My husband is wanting me to be seen privately. I have a consultation on Monday night and they said they can do the surgery before Xmas! So they are looking to do the key hole. My Gynae said that with the scarring and adhesions, Key hole might not be possible and would be cut open. Hoping that won’t happen though. The plan is to detach my ovary from my womb, clear any Endo tissue that’s present, flush out my tubes as they believe they are blocked (if it’s possible), fix me down below as I’m an absolute mess after having my son 5 years ago. Forcep delivery and the way they have cut and stitched me has left me all lumpy plus external pain/scars bleeding when myself and my partner have sex (what even is that anymore? ) bowels and bladder both affected by the Endo tissue as well.

I’m just looking for some advice from others who have had similar surgeries. What was the outcome? How long before your were recovered? Did it help your symptoms and were you able to live a normal life? I am unable to work, daily pain, depression is horrible as well as the infertility. What a horrible condition for us woman I’m just desperate to get back into the Pharmacy and live a normal life for my son without been in daily pain

Thankyou all 💓

[luthien]

Hi,

I can so relate to a lot of your story so far apart from having a child as I'm not there yet!

I did a post a while back about my story, GPs, private surgery, recovery, outcomes . . . you get the idea. Feel free to have a read:

healthunlocked.com/endometr...

I also looked into a lot of physio post surgery, I didn't even realise a few of my endo related pains could be relieved by physio, I haven't done an actual post on it but did reply to a lady about what I'd gone through / found / had treated:

healthunlocked.com/endometr...

I hope both of those help in some way xx

[cikimac in reply to luthien]

Thankyou for your reply. I will defo have a read.

Tbh, I was told as a teenager that my chances of conceiving were very slim. I have had several M/C and then it was only after my previous surgery at 22 (They said adhesions but im now thinking it was the start of Endo) that I actually conceived my son and carried him to term. There’s been nothing since. I do hope that after surgery, it will happen again but I know my boy is an absolute miracle.

Will have a read of the links you have attached. Thankyou 💓

[GoldenGirl2002]

I have just had excision of Endo all over my pelvis, ovaries, bladder and behind my vaginal wall privately. I was told by nhs gynae it would be impossible to do keyhole and cause lots of damage but I had all done via 3 small keyhole sites and I’m on the road to recovery! I would say recovery is a hard road, you’ll have a good few weeks feeling sore and tired- I’m in week 2 and still spending most of my day in bed but it is so worth it and the treatment privately is so much nicer and more understanding. Good luck! Xx

[cikimac in reply to GoldenGirl2002]

Hi there! Thankyou for your reply? Do you mind if I ask if you had any bladder problems? Everything really kicked off for me about 2 years ago. My pelvic region, bladder and bowel all started causing me problems. For years I have been experiencing cystitis and frequent UTI’s. I ended up with a catheter for 3 months as my bladder kept spasming and I went into retention. My bowels - chronic diarrhoea and bleeding. I’ve had different symptoms for years BUT everything came to a head early 2019 and it’s not calmed down. Before I used to be able to say where my pain was etc and now it’s just everywhere. 😭 Private consultation on Monday night. I asked my GP for my medical records and they don’t seem to be a rush to have them done 😣 I would have preferred to have had them with me but I suspect it won’t be my first meeting with the private doctor!

How are you feeling (aside from the healing pains etc). Are you feeling positive? I’m just desperate to get back to work and be a proper active mum to my boy. I hate that he sees me tired every day and curled up on the sofa 😭

[GoldenGirl2002 in reply to cikimac]

I had awful bladder problems, I constantly needed the bathroom and get the most horrendous pain when I wee that it often makes me vomit and pass out. I also have really bad diarrhea when on my period. You sound really similar to me, I used to be able to pinpoint pain then it just became constant and everywhere!! I’m so sorry you’ve suffered so awfully, I hope you make some progress soon. I feel much more positive post op, I’m very sore still but apparently that’s normal but will ease in the next few weeks. I was misdiagnosed by my last gynae who missed loads of Endo in her laparoscopy but now I know what’s been happening it’s a big relief. I want to get back to normal, I’ve just turned 18 but I’ve been bedbound or thereabouts for months with pain and vomiting, it feels as if it rules your life and my college work and uni application process has suffered, as well as my social life! I’m happy to answer any questions and keep me updated, it’s a hard process but there’s light at the end of the tunnel xx

[CrystalKeeper]

Hello lovely,

Endo is an oestrogen sensitive disease and surgery is one part of the suppression strategy, the other is taking some form of hormones after to control the regrowth rate.

I too have extensive endo stage 4 on the bowel too this is only 2 %-5% of cases. I will be having surgery too.

My gynae has informed me that post operative hormones progesterone or Zoladaex will be necessary to slow the growth rate, 1/3 of women have a faster agressive endo and since I have it stage 4 extensively in the pelvic cavity I am going to assume I am one of those stats. Its really necessary for me to be real about that and use the hormonal progesterone treatment or Zoladex.

I am also looking at a wholistic nutritionist to work on my osestrgen metabolism, another way to reduce oestrogen in the body alongside the hormone therapies. As long as we have alot of oestrgen circulating, the endo is an environment to grow.

I hope your survery is a wonderful improvement on your quality of life !

Best wishes