op number 2 here we come!!! : hi all, ive... - Endometriosis UK

Endometriosis UK

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op number 2 here we come!!!

dawntildusk profile image
28 Replies

hi all, ive seen the endo specialist today and im pencilled in for another lap!! he asked how i have got on with the prostap the last 3 months and thinks really that a hysterectomy is the answer for the adeno as it has helped with the pain and bleeding. he assures me that hrt would get rid of all the menopausal side effects. BUT he is still concerned about my age. he suggested i could try another injection and have hrt (think he said tibilone), have a lap to excise endo (and maybe have a coil fitted at same time), or go straight into hysterectomy with removal of ovaries. i opted for the lap first. although im pleased something is happening it all feels very daunting. prob just here for reassurance that ive made the right choice. wondering if i should try another prostap with hrt whilst i wait for lap. might help in making decision for hyster later on ??? any advice would be appreciated x

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28 Replies
Tboag profile image
Tboag

Hi, ive just had a hysterectomy for Adenomyosis, but overies left in, I have endo also and although my gyne surgeon said it has/excise all the endo, I don't think his done a great job, I'm still getting endo pain, so ive now been referred to specialist centre, where I should have been seen in the first place, arrrgggg

Good luck with your lap,

dawntildusk profile image
dawntildusk in reply to Tboag

hi thanks for your reply. this is why i have opted for endo removal first. i think its highly likely that the hyster will follow but after speaking to lots of people i understand that many still have problems due to endo still being there even after having the hyster. my specialist said he would remove ovaries too. prob should of asked why but didnt think at the time.

Tboag profile image
Tboag in reply to dawntildusk

A full hysterectomy with overies left in is a cure for adeno, but if overies are left in it dosnt help with the endo, but I'm only 40 this year that's why my gyne said best to leave them in,

If hyster and good removal of endo is done it's more likely to end pain and symptoms

dawntildusk profile image
dawntildusk in reply to Tboag

hoping that having the lap first then is the right way to go about getting it sorted properly. how did u feel in yourself after having the hyster?

Tboag profile image
Tboag in reply to dawntildusk

It's only been 12 weeks, I think ive recovered well from the op, but still have the endo symtoms, so feel much better than before the op, but still not 100 % pain free,

If I didn't have endo, I think I would be fine after hysterectomy

dawntildusk profile image
dawntildusk in reply to Tboag

hope u manage to get yourself sorted x

Tboag profile image
Tboag in reply to dawntildusk

Thank you,

How old are you?

dawntildusk profile image
dawntildusk in reply to Tboag

im 35. so a way off natural menopause. how long did it take for u to recover? were u off work long?

Tboag profile image
Tboag in reply to dawntildusk

I'm surprised he has suggested you have your overies out, I think you should Defo try total excise of endo first,

Really had to say, due to still being in pain,

I lost my job due to endo adeno earlier in years o wasn't working, but started a part time job at week 8. But was still very tired.

dawntildusk profile image
dawntildusk in reply to Tboag

feel its a step in the right direction. i will try to ask him more about removal of ovaries next time. better start writing another list of questions!! thank u for your advice and take care x

Sweetyassi profile image
Sweetyassi

Hi,

I had a lap done last year November to remove Endo, I had to go privately to get it done. The op has been a success so far, but am still a bit worried that Endo could return. I had a hystercretomy done 3 years ago I kept my ovaries. For me it was a waste of time having hystercretomy done as I was assured it would get rid off my Endo forever. I'm recovering slowly with only a few minor issues like since having my very first op in 2009 I have now been diagnosed with celiac disease as I have been having problems eating solid food since 2009.

Please don't rush into getting a hystercretomy done please do your research and if you still feel it's right for you then get it done. Only you know you're own body no one else not even the doctors know exactly how you are feeling from the inside or how your coping.

Sweety.

dawntildusk profile image
dawntildusk in reply to Sweetyassi

hi sweetie, sorry to hear u r having so many problems yourself. do u think this is because they left your ovaries in? are these other problems a result of having the hyster at a young age? its so hard to know what to do for the best.

sujs1972 profile image
sujs1972

I read your post and was confused as I thought that they couldn't tell whether you have adenomyosis until they examine the uterus post surgery - so i looked it up... The Mayo clinic says - "The only way to be certain of adenomyosis is to examine the uterus after surgery to remove it (hysterectomy)." A hysterectomy seems a very big step unless your doc is sure that this is what's wrong. Have you had biopsies to rule out other uterine conditions?

I hope I'm right in saying that if your symptoms are caused by endo, then the Prostap would suppress that - giving relief. Another course of Prostap before your op (or so I've read) might cause the endo to be less visible during surgery resulting in incomplete excision. The endo would then 'reactivate' in the absence of the drug.

Tboag profile image
Tboag in reply to sujs1972

I had a hysterectomy due to Adeno, it was confirmed after by checking the uterus, a doc can be very sure it adeno from a lap, due to lumpy and size increased uterus and of cause the symptoms and my consultant said he thought it was adeno after a internal, as my uterus was very large and lumpy to feel,

Very confusing deseases,

Xx

sujs1972 profile image
sujs1972 in reply to Tboag

Thank you - the size and shape of my womb is the one thing about me that is normal so I haven't read much about it!!

dawntildusk profile image
dawntildusk in reply to sujs1972

the size of my uterus is enlarged and bulky too.

dawntildusk profile image
dawntildusk in reply to sujs1972

hi. yes i had an mri which showed up the adeno. i also have 3 endometriomas and pelvic congestion syndrome. i am sure u r right that ultimately it is only after biopsy of a precise area that adeno would be confirmed. i did wonder if the prostap might make things less visible. only crossed my mind today. so might be best having nothing inbetween. definately want all the endo removed.

sujs1972 profile image
sujs1972 in reply to dawntildusk

I can't remember where I read that it would be less visible - I'm sure you'll find things on it if you consult doctor google (I think that's what I did!)! You always try and read everything you can, but one year after my Lap I keep coming across other things that should have been considered. Consultants aren't particularly forthcoming unless you ask the right questions. :(

dawntildusk profile image
dawntildusk in reply to sujs1972

im sure i prob read the same somewhere amongst the 100s of pages ive also researched!!! lol

maybe it depends on the scale of endo/location etc.

sujs1972 profile image
sujs1972 in reply to dawntildusk

From:

endometriosis.org/treatment...

Use before surgery

GnRH agonists should not be used before surgery to reduce the extent of peritoneal (superficial implants) disease. Reducing the number and size of implants can make surgery more difficult by making it harder for the surgeon to see where the disease is present [1].

Treatment with a GnRH agonist before surgery may reduce the likelihood of ovarian endometriomas recurring [7], but the evidence is controversial [8].

dawntildusk profile image
dawntildusk in reply to sujs1972

trust me to have endometriomas. lol

Sweetyassi profile image
Sweetyassi

Hi,

That was my first thought that all my problems were to do with my ovaries being left behind. But it's not. My very 1st op in 2009 I had to have an emergency bowel resection done, as I had Endo inside my bowels, since then with all my other ops my insides have become very sensitive to food and the lining of my bowels are weak and sensitive so whatever I eat I'm in pain. I'm okay with glutenfree, DairyFree, soyafree, red meat free diet, but I have days when my insides are too sensitive that I need to have liquids only for a few days so my stomach settles and then I can start eating solid food again.

To tell you the truth I'm kind of scared of eating solid foods, I'm actually happy with liquids but I need to eat so my family don't worry about me.

I'm 39 now and had my hystercretomy when I was 36 years old.

dawntildusk profile image
dawntildusk in reply to Sweetyassi

it was previously suspected i may have bowel involvement but mri didnt show anything there. i bet its been awful for u on top of everything else. do u have to take any other medication since the hyster?

dawntildusk profile image
dawntildusk in reply to Sweetyassi

how did u feel in yourself after the hyster?

Sweetyassi profile image
Sweetyassi in reply to dawntildusk

Yeah it has been awful and very stressful. I was on loads of meds but now I'm coming off them slowly. The only ones I take now are Lansoprazole and Citalopram and Nuromol.

I was still in a lot of pain after having the hystercretomy done, I had loads of bladder infections, bleeding in my urine.

My last op was the only one that worked for me, all my other ops didn't help at all.

dawntildusk profile image
dawntildusk in reply to Sweetyassi

is frustrating when u think u r having an op that is going to make things better. hope u manage to get sorted sooner rather than later x

Sweetyassi profile image
Sweetyassi in reply to dawntildusk

Thank you. I hope you feel better soon too.

dawntildusk profile image
dawntildusk

starting to get nervous now as my date should be coming through any time for my next lap. my period hasnt returned since having the 3month prostap in july but had a bad couple of days of severe ovary pain last week where i even considered going to a and e but i held off. im wondering now if i should try having the coil fitted at same time as the lap???? or is this likely to mask any problems????

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