Has anyone had Ovarian Suspension surgery?

[teacosey]

Hi there,

An option for me apparently is for my surgeon to sew some of my organs in place. He mentioned the ovaries. Has anyone had this done on their ovaries?

Its all so confusing and depressing....

Thanks!

Tea Cosey

[AshleyJ]

Hi - yes I have had this done, and I agree it is all very confusing. My doctor told me it was to allow the ovaries to heal after the surgery and hopefully not to get stuck to any of the organs again with the scar tissue / adhesions.

[teacosey in reply to AshleyJ]

Thanks for replying!

Do you mind me asking.... When did you have it done? Have you had other surgeries since? Had it helped, or did it make no difference?

And importantly, did you feel any benefit from it in terms of pain? Or was it worse?

See, I cannot help wondering whether, in the long run, it is a good idea. I have adhesions, and had a total obliteration. I had surgery in December. After scans, it seems more adhesions and a big cyst are back already. So my Endo-surgeon is discussing various options with me, and this is one of the things that came up in consultation. But I cannot help wondering.... the adhesions pull your ovaries towards other organs, but if they are stitched into place... won't it hurt more? Won't I get pain from the ovary being pulled in both directions?

(Does that make sense?!)

[stevieflp in reply to teacosey]

Hi I have had ovarian suspension also.

I underwent an operation called 'total radical excision'. this is where the whole top layer of the peritoneum is excised (stripped out really) (membrane that forms the lining of the abdominal cavity). This removes all seen and as yet unseen endo and helps to separate other organs that have become stuck together. As part of this I also had endo removed from bowel, bladder, diaphragm, recto/vaginal etc.

The surgeon passed a large looped stitch around each ovary and pulled them forward onto the front wall of my tummy and secured each of the stitches on the outside with what looked like small buttons. This was to allow the peritoneum to start the healing process and keeping the ovaries away so that they were less likely to become stuck. After a week the buttons/stitches were removed and the ovaries were able to fall back into their natural place. I was a bit anxious about the stitches coming out but I did not feel anything much.

I have seen that some ladies have seen surgeons who say "oh we might as well take the ovaries out as they will only get stuck". Not necessarily so if they are able to do this technique. Not all can. You are lucky if you have one who knows this technique.

All best wishes x

[teacosey in reply to stevieflp]

Hi Steveflp

Thanks for replying! Would you say that the ovarian suspension has helped? ie. Have any adhesions grown back? Any ovarian cysts since having this done, or any other side effects? Good or bad??

Thanks!

Tea Cosey x

[stevieflp in reply to teacosey]

Hi - I had my operation 2 years 8 months ago and, thankfully, I have had absolutely no problems since. Back to normal in all respects, whereas before that I was at times incapacitated with pain, and increasingly so. Both ovaries are functioning normally as far as I am aware with no tell tale pains which could indicate recurrence of cysts. That was down to the 'total radical excision' removing all seen and all unseen endo. The temporary ovarian suspension was an add on to that rather than the main op and helped to save my ovaries.

You never know with endo how long the benefits of any op will last but the medical literature for radical excision was positive for a longer-term eradication. This differs from what most surgeons do when they say they do excision - they actually just remove patches of seen endo rather than the whole lining of the peritomeum. Hence ladies generally end up going back for further patches to be removed over time. I definitely think the temporary ovarian suspension helped to save my ovaries.

Off on a tangent now but, since the op I have done a lot of reading about estrogen dominance (Dr Michael Lam and others) as estrogen dominance is thought to possibly be a contributory factor to not only endo but to many other conditions such as fybromyalgia, cervical erosion, pituitary prolactinoma, PMT, post-natal depression, miscarriage, osteoporosis, female cancers etc. Different conditions but possibly with a root cause depending upon your estrogen receptors as to what will develop, apparently. Even with low estrogen you can still be estrogen dominant if progesterone is low in comparison. A routine blood test confirmed this was the case for me and over the years I have had a cervical erosion, pituitary prolactinoma and advanced endo.

I have also done a lot of reading about all the chemicals we plaster ourselves with on a daily basis, some of which are xenoestrogens which mimic estrogen and are absorbed through the skin. All adding to the estrogen exposure and possibly contributing to estrogen dominance et al.

I have since taken steps to help to reduce the amount of external xenoestrogen exposure. I now use Eco washing powder, toiletries and cosmetics without nasty chemicals, particularly parabens, sulfates and pthlates and others (toothpaste, bath stuff, shampoo and conditioner, moisturiser, make up etc) and do not drink out of plastic or heat up food in plastic trays as BPA which is used in plastics leaches out into food and drink. Obviously I did not change these all at once but did so on an as and when replacement came up over the past year or so.

My efforts maybe akin to a raindrop in an ocean but it makes sense to me to reduce these nasties anyway and maybe reduce exposure to external estrogenic sources too.

xx

[teacosey in reply to stevieflp]

I completely agree! I use soap nuts for laundry, NatOrigin face creams, and I never ever cook in plastic. We make everything from scratch.

I think every little helps....!

I also have soya and quorn-type products very very rarely, as I've read that these can promote oetrogens in the body somehow.

But when I asked my GP for hormone blood tests, she refused. She said that if my hormones were out of balance, then I would not have periods at all. So then I asked my Endo-Surgeon for the blood tests, thinking he would agree with no question. But he said no too! He said that hormones change every day of every month, so hormone profiling is "pointless".

Grrrr....

I had what I was told was radical excision for my second op (I had an ablation for the first op a year prior to that, and it helped nothing!). My second op has helped on some ways, but I am actually worse in others (eg bladder). I had scans six months after that second surgery, which confirmed I have a massive cyst back on the left, and adhesions on my uterus-ovary-bowel on the right side.

But I had both surgeries on the NHS. Do you mind me asking, did you have yours done privately? Was it that surgeon up North beginning with T.??? I discovered him online, but was told by my Gynae that the NHS surgery was exactly the same, so I did that. But I have always wondered whether I should have tried the private route, and whether I would now be problem-free if I had done.

Sorry this is so long, and a bit negative!

Tea Cosey x

[stevieflp in reply to teacosey]

Don't apologise. It is rubbish what we go through with this 'thing'. The pathway to getting a decent consultant who adequately understands endo ican feel like a minefield.

I personally would not see a general gynae for endo and GPs tend to refer to gynaes where it is often a string to their bow rather than their specialism (not in all cases naturally). This really is and should be a specialist sub-class of it's own. Sadly there are too few actual endo specialists. I have come to believe that this is because endo is considered to be a 'women's problem' and lumped with gynae when in fact it's effects are wider than that. Also because it is not terminal and ops like total radical excision take up a lot of resource and specialism, the NHS has perhaps not put the funding into this area, although there are now some specialist endo centres.

Your consultant was quite right about hormone tests needing to be done over a period of time rather than singularly to get an accurate result.

Yes it was the man up north who you have indicated. Brilliant. The care he gave was fantastic. He even called me a couple of months ago (over 2 years later to have a chat and see how I am doing!). All his patients also complete an annual questionnaire for audit purposes to officially track the success or otherwise of treatment. I went up to Elland from London and I think it was well worth it.

As far as I am aware he is the only surgeon in the country who does 'total radical excision" and he pioneered this and temporary ovarian suspension. Dr David Redwine and Dr Andrew Cook in the USA are also of the view that it is more effective for the whole peritoneal lining to be removed rather than just seen patches of endo. My op took 7 and a half hours to perform (all keyhole). Total radical excision generally takes between 5 and 10 hours to perform so that will give you an indication.

I know I am lucky to have had a very good outcome but there are of course no guarantees. I am sorry you are having bladder problems. I would say that I don't get such an urge to 'pee' as strongly as I used to before my op as I did have bladder work done and, by the time I do have that tingle when my bladder is full, I can't ignore it for as long as I once might have done without risk of embarrassment so I have learnt to be more mindful in that department but it is not really a problem. As I get older it might become more so!

Glad I am not the only one who is concerned about the xenoestrogens and switching to using a reduced chemical cocktail. With this nasty 'thing' naturally the first concern for anyone is getting treatment. I wish someone could have told me about the cosmetic / pharmaceutical industry years ago. It is something I never gave any thought to at all. I also now use feminine care that is not bleached and has no radon etc.

All very best wishes x x x

[demeter in reply to stevieflp]

Hello

Thanks for your info.... May I ask who you had your surgery with? X

[Dear86 in reply to AshleyJ]

Hello there

Sorry to hear you're having so much trouble. In the last 18 months I've had three lap and lasers plus cystsectomy in private hospital in North London. My initial problem was endo, cysts and adhesions but after laser lap and norithisterone to suspend my cycles endo has disappeared. The problem I had was adhesion sticking my left ovary behind my womb. Very painful, crippling and depressing.

This last time I debated having the ovary out, or temporary ovarian suspension but after reading all of the medical literature on TOS, including British Medical Council clinical trials, I realised there was no significant difference in test groups as to whether the adhesions reoccurred.

My insurance also wouldn't cover Mr Trehan's fees so watch out for that.

In the end I stuck with my awesome Gynae - expert in lap and laser for endo and he did an ovarian suspension with a permanent internal suture. This compromises some fertility but obviously not as drastic as getting rid of the ovary altogether.

So far I am nearly three weeks post op. adhesion pain and associated sciatica has gone. There is a pulling sensation on my ovary when I walk but I am told this will go with time. So far, everything my surgeon said has come true so I trust him on this too.

I hope it's the last surgery I'll need. If you need more info or want to talk, please get in touch. I've spent so long researching all the options I might be able to help in some way. I know how difficult this decision making process is. I really wish you all the best.

Xx

[teacosey in reply to Dear86]

Thanks so much for your reply. Just so I am clear... the part about "no significant difference in test groups as to whether the adhesions reoccurred", do you mean the trails were comparing ovary-removal with ovary-suspension (sewing an ovary in place, away from other organs)? Or were the trials comparing ovary removal with excision / ablation??

Thanks ever so much,

Tea Cosey x

[Dear86 in reply to teacosey]

Hello there

The clinical trial was testing two group of women with ovarian adhesions. One group had the temporary ovarian suspension. Te other women simply had the adhesions removed and ovary mobilised. Some months later there was no significance between the groups in terms of how many reported new adhesion pain. It was the same across the two groups. That's why I went for the permanent ovary suspension - it keeps the ovary away from the site behind my womb where it keeps sticking.

Hope this helps?

Xx

[teacosey]

Got it. Thank you.

Lots to think about....

Tea Cosey xx