Denied Surgery need advice on these meds

[givemeananswer]

Hi all, saw the specialist today after waiting three months for the appointment. He had a c-section so my 11:!5 turned into 5:15 but after an interview with his student intern and the presentation I gave of all my past 3 laporoscopies and laporotomy for my hysterectomy due to adenomyosis. He said that they don't do surgeries for endometriosis anymore he doesn't advise it and gave me the names of hormone inducing menopause drugs to chose from instead.Despite my being 50 years old I'm apparently not appearing close to menopause he said by the appearance of my vagina.

The drug names are visanne c, or dienogest (which he highly recommends) and GNRH (anacolae?) can really make out his letters. Can I get some feedback from anyone who's tried these drugs. I'm not liking the idea of having to take hormones, always had horrible sideeffects from BC so that's why I wanted surgery.

I know the time will come when menopause is going to happen naturally but right now can't continue with this pelvic, hip, and back pain. Don't need to gain more weight either, already have high cholestrol and tryglycerides and osteopenia, (something he disclaims means anything as well).

[emily_83rob]

Find one of the endometriosis centres and arrange to see someone there instead, who does agree with surgery. My consultant is a specialist in endometriosis and believes the only way to get rid of endometriosis is through surgery. Although as we all know, it can come back. Definitely seek a second opinion though if you're not happy. My first consultant didn't offer surgery, but she wasn't a specialist so I sought a second opinion, as everything I'd read suggested surgery was the best option for me. Good luck.

[Impatient in reply to emily_83rob]

Emily - she's in Canada - different system over there.

GMAA (I'm shortening your name) - I agree that you do need to seek out a 2nd opinion.

I think your Doc has probably written GNRH Analogues (not a specific one of the GNRH drugs but referring to them all in general terms.

They do reduce the bone density and are all contraindicated for ladies with osteopenia, they can only be used for 6 months in a life time in a healthy boned person, so it really doesn't suit your needs on both counts:- the osteopenia and also length of time needed to tied you over to natural menopause.

Visanne (Dienogest) is still in clinical trials and will not be available in the UK for a few years yet - if it passes muster at the end of the trials.

Phase 3 trials just started in China and are due to finish end of 2015 then phase 4 trials begin.

Phase 1 was in Canada which is why you have access to it over there.

Again - it is already known to reduce bone density - but not at the speed that GnRH drugs can do that, so it might be worth considering as a possible option.

If it were me in your shoes I would insist that I have an uptodate DEXA scan on the bone density situation as it is now, before deciding whether to risk further loss or not, and perhaps to have other DEXA scans throughout -every few months - to monitor the situation. You may feel that you can't risk osteoperosis if you have a family history of that then obviously it must be taken in to account.

4 surgeries (1 a big one) may also have bearing on just how much more surgery your tummy can cope with and it could be that the risk of harm from scarring and adhesions will be considered to outweigh the benefits of yet another op.

It is something to consider, and finding the best endo surgeon you can lay your hands on would also mean it is more likely that this next op, if it goes ahead, will be the last in terms of endo. Having a decent job done to remove all existing endo is certainly a goal to aim for.

It certainly isn't a straightforward case because the other medical complications of the osteopenia situation and a previous history of multiple gynae surgery, but I would definitely advise that a 2nd opinion on the surgery side is worth seeking out.

Visanne is still very new product and there isn't a great deal of info yet available.

I am always a bit cautious about why the drug manufacturers do their later clinical trials in so many non-english speaking countries - where patients who report their side effects and experiences online are less likely to be read and understood when written in non-roman script letters. There could be an internet full of unsatisfactory experiences and we won't know unless be happen to also read the languages of the countries involved in the trial.

It seems to have had a mixed response from the overseas ladies who have reported back on this forum, and no one will have yet been on it long term for the length of time you are looking likely to be needing to be on it.

It might be worth a short trial run of 2-3 months to see if it can ease yours symptoms. If that doesn't work and there is no sign of improved quality of life then at least you tried it and you can then leave it and hopefully it won't have done too much extra harm to the bones.

I do think bit more research is needed - and you do need to seek the opinions of other endo surgeons too. Very best of luck.

[givemeananswer in reply to Impatient]

I have really come to admire you Impatient, I hold your advice in high regard, so thank you for responding.

Last night I saw the link you sent another member regarding those clinical trials in China, and I agree with you. Don't really care to be the canary in a coal mine, but I can respect the aversion to doing more surgery for fear of further damage as well.

It's difficult physiologically to deal with seeing a specialist who comes across as being quite arrogant. I knew this time going in to filter that part of it out but he really through me up against the boards in front of his intern(Canadian hockey analogy). It's challenging once you feel doubly victimized to think clearly, so thank you for helping me put this in perspective. He said at my age I shouldn't be getting bone density scans that they are worse for me than the actual bone loss and to stop getting it done. When he asked me how I'd been treated for my endometriosis in the past I made the mistake of saying with laporoscopy! He turned to his student intern and said "yes, it has been known to be used for treatment, a placebo effect, they believe that just the laporoscopy alone stretches the nerves to relieve some of the pain associated with endo", ugh, I corrected myself and said with excision, coagulation ect. I found the man to be quite pompous and staggeringly so for his student.

They dissect the human element from the disease, they don't care if taking these drugs makes you loose your marriage, your hair,whatever, the goal is to give you what you came to ask for, which in my case was elimination of pain. But of course I have to come home study these options to weigh the pro's and con's- to which there isn't much information on yet.

I fear what natural menopause is going to do to me, as bearing witness to others close to me whom had really hurt me during their time through it. As my daughter put it to me last night while I read the known side effects of the visanne dienogest to her out loud, "if you get any more sensitive or fatigued you might as well be dead" hahaha. I know from trying almost every birth control pill available or at least it seemed so, that I am not the same person. When the walls starting closing in on me I had to find alternative methods. So I opted for tubal ligation with my first laporoscopy for endo. Part of me also believes that it was the pill that messed me up and gave me this disease in the first place. I never had a period cramp until I went off it of course this was when the pill contained a much higher dose of the synthetic estrogen many years ago. My mother never had a period cramp in her life. Actually don't know what she used for birth control. But anyway this is the struggle I have with making the decision to try hormone drugs. I feel I am subjecting myself to the possibility of maybe breast or ovarian cancer for the price of not dealing with the pain. Pain vs. Cancer, hmm. My mothers sister died from ovarian and breast cancer. I already checked off all the boxes in the symptoms and always worried that was what I had even before I learned of what I had.

How will I know I don't have early ovarian cancer? I did the CA125 blood test but read on the forums that isn't a fail safe method and that having had a hysterectomy my values will be lower. Do artificial hormones reduce your risk for ovarian cancer I know that leaving your ovaries in after menopause doesn't. I also have a high rate of high blood pressure and heart disease in my family history. Are these added risks with this medication? Who knows. I know that arthritis medication are and I'm already showing mild bilateral facet athropathy in my lower lumbar discs even before menopause.

Sorry for rambling It's helping me work it out in my brain.

Well thanks again Impatient, I think I WILL seek out a second opinion, unfortunately I am not aware of any endometriosis specialists here which is an added challenge.

GMAA, XXX

[givemeananswer in reply to emily_83rob]

Thank you emily_83rob,

I will seek a second opinion but Impatient is right, I'm in Canada I am not aware of any endo specialists here. I was hoping to, if nothing else, just give me confirmation that it is indeed the endo that is to blame as it has always been the root of my back pain in the past, and I always had relief of my back pain after laporoscopy intervention via, excision, coagulation, laser ect.(see my post to Impatient you'll understand why I am being specific). I figured maybe this would have to be my last kick at the cat to get me by until my ovaries stopped producing estrogen natuarally. I do still have to get my physiotherapists consensus about my last MRI report for my lower lumbar to see if it will change how he is going to treat me for my back pain, ect. But I value your input we all need to feel that we have others backing us, especially after visiting specialists!