anybody had endo return after hysterectomy?

[shrek]

Hi - i had a hysterectomy 10yrs ago, my ovaries still remain - my endo has returned, i'm now considering having my ovaries removed to prevent a reoccurrance - any body had a similar experience ? any advice gratefully received, thanks. x

[KU0429]

I had a hysterectomy after 19 years (and 13 laparoscopies) with endometriosis. The doctor did NOT remove my ovaries. I continued having pain and was then told by another doctor in the same practice group that she could not believe that my ovaries had been left! She said that any endometriosis which was still in my body would continue to cause problems due to my ovaries being left. She actually seemed quite shocked and upset by it. I wound up having some endo actually grow on one of my remaining ovaries!

WARNING: I am going to find another place to post this so that it can be viewed by as many women as possible but want to tell you also - please be careful about the number of surgeries you have. My quality of life has been GREATLY affected due to the damage to my pelvic floor muscles and I am in constant pain. I have to take a fairly high dosage of narcotics and muscle relaxers on a daily basis. I was finally told this by a doctor from a different practice group. Don't let this happen to you. It is awful.

[shrek in reply to KU0429]

thanks 4 your reply!

i'm so sorry to hear you've had so much trouble and left with so much pain.

i've only had the 1 laparoscopy and then my hysterectomy - i've seen my consultant 2day who has put me on a medicated menopause for 6mths and if that works then they'll look at removing my ovaries. fed up of feeling rough really so will welcome anything that will help.

thanx again and all the best to you. x

[sharonkeefe1968 in reply to KU0429]

Glad I found this thank you. I had 11 surgeries and February will be 19 years for me. Five years ago they were going to remove the ovaries and I lost my insurance before they could. This week I found out I have a dense cyst growing on one and my biggest fear was cancer because it runs in my family. Seeing this has made me feel much better

[Lizzie71]

I had a hysterectomy in 2008 keeping my ovaries. Am in agony every month again now! GP put me back on the pill, which at first was angry about but tried it, 2 months later, it has calmed and leveled my mood (no deep depression every month now) but has done nothing for the pain.

What do we do now? Removal of ovaries is still no cure so what now? I don't have an answer for you but thought would let you know you are not alone :o( x

[shrek]

Thanx Lizzie - it's so frustrating isn't it.

I am dreadful on any sort of medication especially the pill, so i have no idea how they're going to control this.

The consultant told my partner " it isn't a life threatening disease"

I was rather cross,my life may not be threatened but until you experience endo you have no idea how much of life it steals from you - helps to know i'm not alone - sometimes think i'm going mad! all the best. x

[stevieflp]

Hi ladies, I am so very sorry ro read of what you have been through.

I was originally advised to have full hyster and removal of ovaries for stage 4 endo as gynae consultant said I was "in a mess" and was my only option. I would then need HRT.

I researched and found out it was not my only option. It seemed to me - how can it make sense to remove healthy organs, leave the endo behind and then take drugs such as HRT to replace those lost by your own natural ovaries because you need to protect your body with the hormones (albeit you can have non-oestrogen HRT). You don't know until after you have done it if you can tolerate HRT. It makes sense to have hysterectomy if you have it in the uterine muscles but you need not lose your ovaries too on the premise that it will stop the endo if you lose your hormones and then take HRT.

I came across a surgeon who has this view and says it makes so much more sense to save your own hormones etc and remove the endo! Not all general gynaes or even some endo surgeons are able to perform these long and skilful ops but if you can manage to get to see one - it is worth it.

I had total peritoneal excision surgery about year and half ago and I can honestly say I am back to normal with no endo symptoms at all. Back to gym, no time off work, no drugs and with my own hormones etc still in tact. who knows how long for but this generally has a longer term no-come back rate.

Have a look at the website of A K Trehan. Even if you have lost your ovaries now, surgery to remove the endo will still make a difference. Not temporary menopausal drugs, patch laser treatment or patch excision treatment (unless you do of course only have a patch of it!) or you will just keep coming back - but to clear your abdomen of all seen and unseen endo. It all heals more cleanly too when the whole surface area is stripped (for want of a better word). All done keyhole.

Gynaes generally only offer drugs, hysterectomy, oophrectomy, HRT, occasionally they might do patch excision but they don't seem to know what to do with bad cases of endo or refer them onwards to a skilled endo surgeon.

Mine was on ovaries, on bowel, on bladder, on ligaments, recto/vaginal, diaphragm - my bowel was twisted and everything was not in its right place as the pelvis was frozen. It was a frightening, bewildering and traumatic time. But I will never regret going for this type of surgery. for now I have my life back.

Unfortunately surgeons who can do this are far too few but it always amazes me that GPs, gynaes and ladies suffering badly from endo just don't seem to get told about this.

It might well be because those ladies like me who have benefitted from it often are so busy getting on with their lives that they don't post on here anymore to help those still suffering with it so it doesnt get talked about.

All very best wishes and hope you will get the help you need and that feels right for you.

Lots of love

[malibue]

Thank you this will help me as im a due to see a specialist in Derriford hospital as i have grade 4 endo they dont know what else to do with me in my local hospital. im 27years old and they have said i should have a hysterectomy. im really unsure about this. could you tell me what the surgery involves? x

[rainey6373]

Very interesting read!! I was meant to have a hysterectomy & removal of ovaries in October 2011 (after a consultant's doc told me I had 'slight thickening' of the womb lining!!). I came around after 3 hours surgery believing it had all been done, only to be told the next day that it could not be done due to the extent of the endo. I had one ovary removed, along with a 12cm cyst, and that was it, after they could not find the other ovary, and endo is attached to my bowel & bladder,& in the pouch of douglas. Been on Prostap for 6 months, now that is over. I am now being referred to a different hospital for a 2nd opinion. Not happy after being advised to spend the rest of my fertile life on the pill constantly with no break!!

[stevieflp]

I sympathise with you guys completely. My ovaries were like yours. My surgeon removed a large endometrioma and freed up my ovaries from places they should not have been in! If it will help you for your visits, I will explain below the various surgeries as best I can. My hubby is a gardener so my consultant explained it thus:

OK, so if you take the analogy of a plant that takes root.

First Option - Laser Surgery

I am told this takes very little time to master which is why so many consultants offer it (I am using my words carefully here). What it does is burns off patches of endo from the surface that can be seen with the naked eye. However, as it is in effect a burn, it will leave scar tissue. It only removes seen endo and on the surface. Will certainly help where endo is not advanced and contained to a particular patch, or has not gone deep. What can happen though (not always) is that the deeper endo was not removed. It does not come back in same place as there is now scar tissue but it can re-emerge. This is why ladies often express disappointment if they find several months on they experience endo pain again. They might well be told it can't be that endo because it was removed - well yes but . . . it must however be of benefit to minor endo or they would not do it.

Second option - patch excision

This is more skilled process. Sometimes offered by general gynaes but usually the preference for endo consultants. This cuts away the seen endo and removes it at a deeper level. If a patch is successfully removed it is far less likely to re-emerge.

The problem with endo can be that it is not always seen - there might be endo forming at a deeper level that at the time of surgery was not visible. Therefore , although the results from this are better - as unseen endo emerges, back you go for more surgery and in and out for patches to be removed. Again this is really good if you have more minor and contained endo.

Where you have extensive endo i.e. it has spread through the abdomen and frozen the pelvis. Patch excision will help remove some of it and no doubt provide relief but your pelvis will likely remain frozen and you will undergo patch excision from time to time.

Third option - Total peritoneal excision (also referred to as radical excision)

This differs from patch excision in that the whole lining of the peritoneum is stripped away by excision. This means that all seen endo and that which is not yet seen is all taken away and at a deeper level. In the process, the pelvis is unfrozen and things can be put back to more or less where they belong again. As the whole lining is stripped away it also heals cleanly and not so likely to form adhesions as laser or patch excision.

Add on surgery - Temporary ovarian suspension

After having ovaries freed up and endometrioma removed, a large looped stitch is placed around the ovaries and pulls them forward towards the front of the abdominal wall so as to prevent them becoming adhered to the healing peritoneum. After a week the looped stitches are released and the ovaries fall back into place. Ovaries saved.

radical excision sounds like a very difficult op. It was all done keyhole so the wounds healed just like after any other type of lap. The long anaesthetic is probably the most difficult part. Looking back, I can say it was probably a difficult couple of weeks immediately afterwards but now I am back in the position I was before endo (well probably not exactly internally) but I avoided a hyster, still have ovaries, don't need HRT and have no endo pain. Fingers crossed as I say that but literature shows it has a better chance of non-recurrence.

If you have advanced endo, I hate to say it but it needs advanced treatment. Drugs are temporary, laser and patch are for more minor contained endo.

What makes me really sad is that there are only a handful of surgeons who can do this. It isn't hard to see why when laser can be learnt relatively easy and this type of surgery is pretty gruelling for the surgeon. My first gynae consultant never even mentioned excision to me and would have let me settle for a hyster and HRT - I should have been told about excision as an alternative and offered a referral - opportunity to choose.

It does amaze me though that GPs and other consultants don't mention this, particularly where ladies have advanced stages of the disease. They still pussy around with temporary drugs and often not really knowing what to do with you - like you have found out and like I did.

Sorry to go on but you can see I am passionate about us ladies being offered the very best - it sure doesn't always happen - and I don't mean deliberately. I am sure many junior doctors who put a lady with advanced endo on drugs really think it is the answer - short term it can be but I am sure most of us want a more satisfactory result. We want our lives back.

Can we have some more top class endo surgeons pleeeeease.

[shrek]

thank you for your fab response - seeing my GP 2moro so will definately be having a chat with him about this. you have really helped, thank you so much. xx

[stevieflp]

Hi Shrek (love your sense of humour)

Good luck for today.

To bring balance to my rantings - the important point I think my consultant makes is - where you have finished your family and have ademyosis (spelt that wrong) i.e. endo in uterine muscles rather than just around the outside - a hysterectomy will stop that pain. However, the key point is this does not necessarily need to also mean removal of ovaries and HRT and, if you have endo elsewhere in the pelvis (which most of us do) a hysterectomy should also have been accompanied by excision surgery to remove the rest of it too, otherwise you would likely have problems in the future from endo still. I hope that makes sense.

All best wishes

[brooks01]

Hi,I am posting on here ,as I'm at a total loss and is being blocked every time I go Dr's or hospital. 5 years ago I was meant to have a full hysterectomy, but the surgeon said she had to leave my ovaries as I was full of endometriosis. to this day I suffer pain every day bloating, I have had lots of ultra sounds done ,a flexi cystoscopy and keep being told nothing wrong, and as soon as I had the hysterectomy my endometriosis diserpered.I know this is not true,I am going mad constant pain,and Dr's saying I'm fine and it's in my head.