Having both ovaries removed in a few weeks, really need your advice.

[endodoll]

I have severe endo,adhesions and fibroids. I had 2 laps done last year to remove cysts from my left ovary and to remove some of the endo. A hysterectomy was suggested then because I was described as a 'mess' but I said I wanted to try everything else first. So I did, I had the Mirena (terrrible experience), and decapeptyl injections. Injections were great,apart from menopausal symptoms, but for the first time had hardly any endo/fibroid pain.Then of course when the injections finished the endo came back with a vengence, now with very bad back pain.

So, I suggested to my doc and gynae that since the injections seemed to work for the pain, wouldn't having my ovaries removed put me into menopause like the injections did and maybe help the endo and perhaps shrink the fibroid? This is my final option before having a hysterectomy. My main objection to hyster is that I had 3 c-sections and would have to have open surgery again and the amount of adhesions I already have on the scar would make it extra painful.

Has anyone had both ovaries removed? How was your recovery afterwards? How did you cope with menopausal symptoms when you can't have HRT? Did it help your endo or fibroids?

I would really appreciate your advice. Thanks.

[stevieflp]

Hi,

I was also told by my first gynae consultant that I was 'a mess' and my best option was a hysterectomy and oophrectomy (removal of ovaries). I had advanced stage endo (endometrioma, endo on bowel, bladder, diaphragm, utero-sacral ligaments, recto/vaginal - just about everywhere with a frozen pelvis - I had a colonoscopy and the consultant said my bowel was completely misshapen but it had not penetrated the bowel wall).

Anyway, I was not comfortable with the recommendation, was then offered prostrap and could not see the point in this as it was only a short- term six month solution and then what - went through enormous turmoil over it all, did a lot of research (thank god for the internet) and came to the conclusion that removing the ovaries was not something I wanted to entertain as a solution to my advanced endo. This is because, after menopause ovaries continue to produce hormones into old age that help to protect your body from things such as osteoporosis and other conditions. I did not particularly have anything against a hysterectomy due to my age and it will certainly be helpful if you have adenomyosis (which is endo in the muscle wall of the uterus rather than just on the exterior), or for other gynae conditions such as troublesome fibroids etc but you can keep your ovaries and where endo is widespread, having a hysterectomy will not sort that unfortunately without wider excision of endo.

It is also known that endo in itself can produce it's own estrogen supply which is why it is important that it is all removed. Excess estrogen not eliminated by the body via the liver is also stored in fat cells. Additionally, we also get estrogen from external sources by way of xenoestrogens (chemicals in toiletries, cosmetics, cleaning materials, which can mimic estrogen in the body when absorbed via the skin). Therefore, there is no guarantee that over time removal of supply of your natural estrogen via the ovaries will completely cut off supply of estrogen for the purposes of endo. Particularly if you are given HRT with estrogen which is often the case and does not make any rational sense to the recommendation of removing the ovaries in the first place. As I understand it, not to take HRT exposes you to the lack of those protective hormones that post-menopausal women would naturally have.

Before you go down this route, have you considered asking for a referral to an endo specialist consultant surgeon with a view to excising all endo rather than losing your ovaries? This is what I ultimately underwent ('total radical excision') where the whole lining of the peritomeum was stripped out by excision thus removing seen and unseen endo. Most surgeons excise patches of endo rather than the whole lining which whilst helpful, is more likely to result in future ops to remove further patches. I have been fine since my op (2 years and 8 months ago) and still have my ovaries. To help, I have cut down on my exposure to estrogen via external chemical sources by switching brands of toiletries and cosmetics.

The endo consultant that I saw is at the top of his field re endo and he advocates not removing the ovaries for the treatment of endo, only if something nasty like ovarian cancer is indicated, but to remove the endo instead. Many gynaes are not able to do this for advanced endo because it is not what they are skilled up to do. They tend to be able to excise patches of endo in easier cases but for anything described as "a mess", I really would recommend seeing a specialists endo consultant surgeon before making such a decision. I apppreciate that there are too few of such skilled endo surgeons which is why most GPs refer endo cases to generaly gynaes.

I hope by saying this I do not upset your equilibrium with making a decision because I understand how that turmoil feels, having been there myself and what feels like the right solution for one person, may not be the most comfortable choice for someone else with a different mindset. However, having been through the kind of decision making turmoil that you now face, I thought it might help to throw a different perspective.

My first OBS/GYN consultant was not even of the mindset to instigate discussion about excision surgery vs hysterectomy/oophrectomy as a choice and it turns out she specialised in hysterectomies and was not particularly skilled at excision herself, thus was offering me the extent of her own experience when she should have been able to provide a complete range of options/referral. Had I not researched, I would not have known about radical excision or that removal of ovaries was not necessarily going to sort me out with my already advanced endo.

Other ladies on here will be able to give you their own experiences regarding removal of ovaries. I think you ultimately need to trust your own inner feelings of what feels right for you, alongside advice but for such a major decision, I would certainly recommend seeking a second opinion.

All best wishes x x

[LittleMissManx Moderator]

Hi Endodoll

I have had both ovaries removed although not at the same time, one in 2009 and one in 2011. I have now had a hysterectomy due to adenomyosis but chosen not to take HRT for the very reasons Stevie describes above. I am also in the strange position of continuing to have Prostap injections despite being post-hysterectomy. This is due to being diagnosed with Ovarian Remnant Tissue in 2012 and I find Prostap a lifesaver at keeping pain under control.

My GP is okay with my decision not to take HRT in that he understands my reservations at why I dont want to put something in my body that may cause pain and symptoms that I have spent the last four years trying to overcome. However my consultant and I have an ongoing discussion about it at my outpatient appointments as he would rather I did take it. He has said I can stay on the injections until the age I would have reached the menopause naturally so I have at least another 8 years to go.

There is no ideal solution as we are all individuals and we all have different levels of pain and side-effects. I feel fortunate as I suffer few outward HRT side-effects <apart from the occasional hot flush> but I am concerned at what may be going on inside that so far I'm not aware of. My GP is arranging for me to have a bone density scan soon so that will give me some indication of how my bones are coping with reduced hormone levels.The results of the scan may help me decide to start taking HRT if needs be.

Good luck with your final decision and the actual op is fine, much like a lap so nothing to worry about there.

Caroline,x

[worth71]

i have been described similar to you, stage 4 endo, ovaries stuck to each other and to my bowel, bowel stuck to womb, womb to bladder, basically a mess, frozen pelvis, you know the story, they have told me to have a full hysterectomy inc ovaries, but at the moment i am trying to avoid this.

my reasons for this is that all they've told me is they will go in, and it will be open surgery, they will remove the womb and ovaries and 'do their best' to remove as much endo as they can, and to prepare myself that i may end up with a colostomy bag afterwards due to so much endo being on my bowel. Then if need be they will pop me on a bit of HRT if my menopausal symptoms are too bad (consultants words not mine, and yes he is 'a specialist' at one of the few scattered around the country specialist centres) its just not enough of a guarantee for me to go through such a major op and then still most likely have the same pain a few months down the line, if they cannot remove all the endo then thats where i'll be, and then to have to have HRT possibly, HRT just is not good for you, especially long term, ovaries have a job to do way past menopause, they protect against heart disease and osteoporosis to name a few, HRT long term could cause cancer. I'm just not a fan of fake hormone products, even the mirena caused me massive issues, including hair loss, so i'm not happy with the thought of hrt.

So yes i am trying to not have they hysterectomy, i'd happily have my womb out tomorrow, as i bleed 3-5 days every week at the moment, i had an ablation at my same time as my lap in march, they tell me it could take 6 months to work, I'm at 5 now, so i'm not hopeful, and i think that is down to the fibroids, but even with the bleeding i am coping, admittedly this week has been quite a bad week but generally i am managing it, with the help of cutting out certain foods such as bread, wheat, caffeine, chocolate etc, i am not doing the endo diet but i have recognised certain foods aggravate it more.

i just feel that i didn't get the treatment i'd hoped for from my consultant, i had high hopes as he is a specialist but i felt i'm just being given the cheapest solution, and if i had plenty of money and went private across the other side of the road and saw the same consultant i'd get the excision treatment i want.

good luck with what you decide xx

[AlleyKatz]

Im in same boat as worth71 been given the option of pelvic clearance , just doesnt lie good with me, but iv a cyst on ovary n sml one on other. So confused n scared tbh, mines a specialist consultant n to was very flipent about taking all out n taking hrt for next 10 yrs etc.. But im in a mess inside he says.. Heads battered

[Charliechocolate]

Oh god! It's so similar with me! I too would love to hear thoughts and experience on this ?

What a living nightmare. But today I'm going to write a positive list - try and work out a way forward. The first thing I'm going to do (which is in our control) is be VERY strict on an endo diet. I feel I need to drive this terrible disease - good luck and thinking about you. X

[redshift2013]

Hi,

Recognise all the info. in your post. I have been practically begging for a total hysterectomy for over two years but, because I live 'in the sticks' so to speak, it's only now I've been referred and that's just to pass me onto a multi disciplinary team who will then, maybe, continue to watch and wait my 7cm endometrioma. Endo. specialists seem to be quite thin on the ground. I wish I was rich cos I would certainly go private and not wait any longer.

[endodoll]

Hi redshift2013,

I hope things will move along quickly for you now that you finally have a referral.

I didn't consider having a hysterectomy at any stage, I felt it wouldn't solve my problem but I did feel that cutting off the main supply of estrogen to the endo might be a help. I did sooo much research before I made the decision to have both ovaries removed and it was MY decision, I suggested it to the docs. So I knew all about the bone and heart risks etc. but decided that can happen anyway in life but to be in terrible pain from the endo every day was just not an option anymore.

I am now almost 5 months since I had both ovaries removed, I also had more endo and adhesions removed at the same time and a D & C. Just before I went into theatre, I said to the surgeon 'please won't you make sure to get as much endo out as possible and don't leave any part of my ovaries behind' Don't be afraid to speak to the docs like this, they will respect you more if you control the things up to you. I had developed a good honest relationship with him and he knew at each appointment, I would keep asking questions until I got the answers that satisified me, and I'm not a pushy type of person. I just knew that my health was up to me. They're not Gods, they're just well trained in their areas (hopefully!) I was lucky that my surgeon was a good one (I researched him,ha!) but I still was in charge of me.Also, bring someone with you to each appointment to hear what is being said, this worked very well for me, they will see you have support and a witness!

I have had no pain except for obvious post surgery discomfort but even that wasn't bad. I do have bad sweats at times and my sleep is disturbed but even that seems to be easing off a little. The main thing is I have NO periods so no dreadful pain and bleeding which I endured for years. No awful pain with my bowels. My energy is coming back. I had a dexa (bone) scan done 2 months after the surgery and everything is excellent but of course I will take calcium to keep it that way. I will try to get rid of the weight I put on while I had the Mirena in and therefore I won't have the fat cells to produce estrogen. I can't tell how the future will go, who can? But I don't regret for a second having my ovaries removed and I still have my womb,cervix and fallopian tubes so no prolapse happened. I just couldn't go on as it was, I had tried everything else.

I wish you the very best, take charge and let us know how you get on.

[Moses82 in reply to endodoll]

Hi can I ask how long you bleed for after having your ovaries removed? I am 7 days post op and been bleeding since I woke up from the surgery. The surgeon said when I was in the recovery after the op that bleeding would last 7-10 days after wards then it would stop and I wouldn't get periods. I can't find any info anywhere about how long is normal to bleed for. I just have the fear that the operation hasn't worked. Prior to the op I had been bleeding every day for 6 months despite having depo povera injection and decapeptyl injections. So my anxiety is just so high that my life is just going to be constant bleeding

[chrisib]

Helpful to read this. Just formally diagnosed this week after dx lap on monday (following year of tests etc showing mass growing near bowels). Have endo everywhere bowel incl. and everything stuck together. Have big fibroid and polyp removed for testing. What a mess! Dr rec TAH/BSO if i want but poss to try other treatments first. Still bit in shock. Any advice welcome. Appt with dr to discuss in few weeks.