Adenomyosis confirmed via Hysterectomy after presenting on MRI scan.

Hi guys

Just giving an update on my procedure.

13/03/2018

A new life for me begins post surgery...

Procedure:

Laparoscopic (3 incisions) Total Hysterectomy with **Bilateral Salipingo and *Oophorectomy removing uterus/cervix delivered via Vagina.

(*Ovaries and **Falopian tubes removed ^)

Treating:

Chronic back pain in coxics in particular

Stabbing pains in womb

Twinges, cramps, low down dragging pain, chronic fatigue, stiff sore finger joints, arms and shoulders.

Almost urinary in content, increased urinating, painful bowel movements during menses, heavy bleeding with clots, nausea, depression, anxiety.

Lost life occasions, cancelled plans, holidays, booking life around 3 days in bed bleeding monthly and chronic intermittent back pain.

The Consultant confirms lab test will show Adenomyosis after the womb was extracted, the classic signs, boggy, lesions, scar tissue, enlarged.

A very groggy me on asking the state of affairs after I awoke from anaesthetic "Schocking"...

He told me they were glad my womb in its condition was no longer inside me on seeing its condition.

Unfortunately my hysterectomy proved to also have me with considerable Endometriosis which wasn't present via mri scan on 12/03/17...this often is only saw on laparoscopy/hysterectomy.

My bowel was pinned down to my pelvic wall, 1 ovary engulfed.

Surgeon took as much away as he could he said not "every single" cell will go as there is s risk of perforation of bowel or any organ covered in this tissue.

I'm very pleased to have it over me. The pain last night was horrendous. I'm more in control of it today. I even took extra stash of painkillers last night at 330am after no sleep I topped up because it felt like I really should have been on morphine.

Catheter and drains out have me much more comfortable today. I bled with a drain not being a 100% fit so bled via vaginally though this was mainly fluid and old blood etc not fresh blood just post op flow.

I'm seemingly good to go after bloods are done this afternoon.

Combined HRT for 1 year will keep progesterone coming in to nip the growth of endometriosis.

I guess my pain will indicate if I am free of Endo in years to come.

I just KNEW he would find it present. I was last treated for it in 2012 it was mild and found during removal of ovarian cyst by laparoscopy.

I will check in here soon, if anyone has any questions please feel free to ask.

Battling pain as a community and creating awareness on silent, often invisible conditions that are ruining women's lives world wide.

Kathryn.

[Mary-intussuception]

Thank you so much for sharing. You are so positive, hope you get healthier each day.

[WeeMrsH]

Thank you for sharing your experience Kathryn! I’m so glad you will hopefully now find some relief. I have suspected adenomyosis, but I’m still trying to have children via IVF so no hysterectomy. I only had 1st lap late Dec ‘17 and post-surgery review is next month so not yet spoken properly to surgeon about this. My symptoms have got worse since the lap. The clots I had this period (just finishing) were horrendous; woke at 4am to a monster on my pad (it passing is what woke me), flooded, this thing was 4 inches long and 1.5 inches wide. Similar in previous days just by wiping. Golf ball sized some of them. I’ve noticed an increase in urinary in continence too and until I’d seen your post and until the recent clots I didn’t think about it being connected to the adeno, but now I do- the last couple of months the incontinence has become more noticeable but growing from just when sneezing or laughing, to during exercise which is really getting to me, and most recently in fact just 2 days before this horrendous period with the super-sized clots, I was dancing at a party and had to go to loo 5 times in 2 hours because of the leakage. I am only 36 with no children. I now think it was the weight of my womb given the amount of blood loss and clots I have had.

Anyway so sorry for hi-jacking your post with my woes! I just wanted to say how brave you are and I really hope you find some relief and peace now xx

[Hidden in reply to WeeMrsH]

Oh my goodness, you didn't hijack me at all. Bless you, your situation is mirroring what I went through. I will be very frank with you, lying in my bed for 2 months with my child receiving the basics from me, I decided to go ahead and pay for my surgery, we took a loan out, not very nice that we had to but my wait on surgery was up to 28 months...I just couldn't, my mindet was in a place I wish no one to ever go to...Id been there with you on your toilet trips, on nights out being that bit too drunk to conceal the fact I was in AGONY still with a belly full of painkillers...Ive had this condition for many years and my surgeon confirmed my pregnancy did not cause it in his opinion. My gestation was 4years ago.

I battled the decision to try for another child for about a year though every month I cried in bed knowing my child wouldn't be being looked after properly. My son is 3.5yrs severe end autistic non verbal non communicative (yet) with gasterointestinal issues which are chronic and daily. I couldn't face the possibility of another child with similar issues. It was a decision that had me broken many a day.

On another level and on a spiritual note I woke up out of my surgery with three words almost like Bill board flashing at me , - older - girl - adopt...why this happened?

I cannot say to you that a biological child is not a blessing it certainly is..but I also held guilt for my "faulty womb" producing our son who is a disabled child 😢...as far as I know there is no link to say Adenomyosis will cause disabilities but I have read it increases miscarriage rate which my consultant didn't argue when he discussed my hysterectomy reasons.

I had already miscarried and could not face going through it again.

People who go the IVF route are the bravest women I know. Someone close to me is one of these women so I know how hard it is and that it just isn't the right continuance of an option for some, it's horrendously hard on couples as I witnessed.

I really wish you all the best.

My surgeon discussed with my nurse that when he saw my womb they were both so glad they took it out in the condition it was in becsuse he knew I had financed the operation so he was glad it was as bad as it was, not to mention the endometriosis which he didn't know at the time was in there....

It's a funny thing that my NHS consultant ran a few days a week his private practice in the Private Hospital here, therefore when I told his receptionist I was considering going private she suggested he do the surgery! I was so happy and he continues to text my on his mobile to ask about my progress so I got a very personal service from someone I felt I already knew.

If another surgeon not experienced in endometriosis did my hysterectomy, I may not have got that professional attention in seeing the disease and thoroughly removing it as my consultant did!

I even jested with him that I hoped he got every last cell of the endometrial glands out! 😉

He was extremely generous with the scar placement in my laparoscopy and I believe they are both (with 1 in the belly button) under my bikini line (ok so it's ok to be a little bit vain isnt it lol, life isn't over yet!)

Good luck with your future and know that your body may well make decisions for you on the future (I felt pushed on) but either way your journey in this life is individual and your choices are yours to make.

K.

[WeeMrsH in reply to Hidden]

You’ve been through so much Kathryn. You are so brave!! I really wouldn’t wish these conditions - infertility, endo or adeno - on my worst enemy. I have had 3 miscarriages, all following IVF conceptions one at 16 weeks and the other two at 6 weeks. No natural conception as far as we know. Now we are trying with donor eggs in Greece. This is the last treatment cycle so if this doesn’t work we may well go down the adoption road. I just badly want to carry my own child and crave that maternal bond, and we both want to have some biological connection to our child, if we can. But adoption is very much in our minds too as we have so much love to give and there are so many little ones yearning to receive it.

Will see what my Consultant says about the adeno at my follow up in a couple of weeks.

Thank you for replying and for your positive warm wishes. Best of luck to enjoy the rest of your future- your freedom!!! x

[Hidden in reply to WeeMrsH]

Awww, you are very welcome its no trouble at all!

You have your energies and plans in place and with all the good vibes, luck, love and will in this world you will be a mother one day lady, any child would be so lucky to have you mother them!

I understand everything you said as my close one in the same position relays that biological desire, that passing on of genes, traits and so on, I know that one who wishes and puts their energies into what they most want, usually receive what they have worked towards in finding their unique version of their desires.

Our version is Our son who we know no other child to be like, some days its extremely challenging but we know him only as who he is and I cannot want what I have not got when he is the Apple of our eyes.

Many well wishes to you and your partner for the future.

K.

X

[Greenmile70 in reply to WeeMrsH]

Hi there very new to this but I have all symptoms pointing to adenymosis. I also am going for egg donor and just got my head around it. Very stressful time but I have had to grieve that I will not have a child who is genetically mine however a gift from someone else. I'm just praying that I have a better chance once adenymosis is confirmed. Can this be picked up in a MRI