Looking for a bit of advice. 2 weeks ago I had my first laparoscopy.

[cancan1]

After many years of pain and my periods up the wall had a lap. After the surgery the consultant came to my bed and told me that I had endo and many adhesions. Started me straight away on zoladex and tibolone. Ive read some of the comments posted on here and many women have said not to have the tibolone (livial). There is a family history of osteoporosis. Was told I'd be on the zoladex for 6 months then I'll have to have a full hysterectomy. Due to the amount of adhesions. So as you can imagine I'm very confused over the whole thing. And is it normal to feel on edge all of the time. Feeling anxious quite alot and problems sleeping. Any advice would be appreciated.

[Impatient]

The zoladex has a HUGE number of side effects and many can be very scarey to experience, so please please read up all you can on the drug and the side effects. Use the search box on this forum to look for GnRH and Zoladex and Prostap etc. All the GnRH drugs that are given to us endo ladies are pretty much the same thing.

You are right to be concerned about osteoperosis, the drug certainly does reduce the density of bones, which is why there is a 6 month max use of it in a lifetime unless you are taking it in the fight against a cancer (where your life expectancy would be diminshed anyway.)

You haven't given us your age, but if you have endo and adhesions, a hysterectomy is not going to resolve either issue. The only benefit to you would be to stop having menstrual periods each month, but they can be stopped by other means like mirena coild or birth control pills.

With a high risk of osteo, you should be trying to hold on to your ovaries as long as you can. You need the other hormones they produce to protect bone density and also heart health.

Having them removed , would mean you are duty bound to take HRT for many years to top up the hormones that other body organs are still needing to stay healthy. That is a huge commitment and at this point in time you don't know what the HRT effects will be on the body.

I would suggest you ask your GP to refer you to a specialist endo surgeon rather than a fertility gynaecologist surgeon which most of them are.

there is a list of the accredited endo centres across the UK on

bsge.org.uk/ec-BSGE-accredi...

Find your nearest and ask your GP to refer you there even if it initially for a consultation.

Having adhesions is not solved by a hyst any more than endo is.

Adhesions are scar tissue, they just keep growing. They need to be cut right back like a bramble hedge, and barriers can be put in you to stop them growing and sticking to neighbouring organs, instead they grow and hit the barriers instead.

I had major surgery on my endo, and was found to be severe stage 4 with adhesions everywhere. My surgeon advised that being under 50 years of age he would not offer a hysterectomy to anyone until they were close to menopause anyway. He put me on zoladex after surgery and I had the mirena put in to hopefully carry on stopping my periods when the zoladex course finished, which is what happened.

Please read this article and especially the comments underneath which are written by Mr Trehan - one of this countries leading endo experts.

dailymail.co.uk/health/arti...

Expert surgery to remove the endo is what you do need to have, and to get the adhesions cut right back (with barriers put in if needed.) Then stopping your periods by any number of methods. from birth control pills back to back, to norethisterone, or implants, or mirena coil or even microwave endometrial ablation (MEA) which cooks the lining of the uterus to reduce the amount of bleeding each month significantly.

You have to look at the uterus and bad periods as a separate issue to the endo (which is not in the uterus) and adhsions which can be anywhere they care to stick.

Next step speak to your GPabout getting referred to one of the endo centres for a consultation. Best of Luck getting the right treatment for you bearing in mind the family history of osteo. It is something to be keeping in mind regarding your longer term health.

[cancan1 in reply to Impatient]

Thanks impatient im 38 the special that I'm under is an endo specialist the reason she gave me for hyst is because everything is stuck together because of the scarring. She showed me photos of what she found. The endo has already attached to everything already bowel and other organs. She tried to cortorise the endo but couldn't do much. Ive got appointment on Fri with my gp because of the anxiety issues. Fell loke a novice here, everyone seems to know their stuff. Im glad I found this web site. Thanks again.

[Beau83]

Extremely good advice from Impatient- and a great article to read too. I wholly agree on the view that you should be cautious about a hysterectomy for endo. I hope that you find something that can help without resorting to that. Even if there is a waiting list for a specialist excision surgery on the NHS, surely its better than going through major surgery and a long recovery (Hysterectomy) only to find your endo symptoms are still there at the end of it all?

Best of luck hun x

[cancan1 in reply to Beau83]

Thanks beau83 I've just read the article and the comments. Found it very interesting. I'm on the zoladex for 6 months so she did say that I have that time to think about the surgery. Just confusing when reading all the different literature on endo and hysterectomy some say its the worst thing theyhad done and others say it was the best decision they made. Xx

[stevieflp]

Hi - Following a lap I had also been told by a private gynae consultant who advertised as treating endo that I was a "complete mess" and my only hope was a hysterectomy and oophrectomy. I did not feel comfortable with this and researched and indeed it would not have solved my endo and completely concur with Impatient regarding removal of ovaries etc.

This consultant told me I was overly emotional about having a hysterectomy and oophrectomy! I am not against hysterectomies, for the right reasons! It can help adenomyosis (endo in the uterine muscle) or heavy periods or fibroids etc, but not endo spread elsewhere in the peritomeum. Removing the ovaries is not the answer to starving endo of estrogen either and in fact robs you of other hormones that you do need well into peri-menopause and behond. They gynaes dont even seem to acknowledge all the xenoestrogens we are daily exposed to via toiletries, cosmetics, and phthalates in plastics etc which all minic estrogen in the body when absorbed. They never suggest cutting exposure to these down. They dont seem to look at estrogen dominance either which is easily remedied once identified. Maybe there are some who do but not generally.

Next she recommended Prostrap for 6 months but, again, I researched (thank god for the internet!) and saw that apart from sticking me into chemical menopause and the potential side effects, it was only going to be short term treatment anyway and once stopped, back to square one with what to do next. Really could not see the point in that and the upheaval to my hormones, so I rejected that too - what a bad patient I was.

I came across the website of the surgeon mentioned above. Booked into see him and it was like a shinning light in the darkness. I underwent 'total radical excision' surgery with him which lasted over 7.5 hours but all done keyhole and all endo removed. Thus I kept all my bits and avoided drug treatment. That was In January 2011 and I have been absolutely fine with no sign of endo to-date, completely back to normal. I won't go into detail about the op as I have posted many times about it and it is all on the surgeon's website anyway. It is jsut a shame that he only does private now but there are some other centres of exellence for endo on the nhs.

I believe it was the best thing I could ever have done and I have not looked back, other than to be totally grateful I did not take the advice of a gynae who was not an endo expert or a specialist endo surgeon. She specialised in hysterectomies and confessed when confronted that she only does 'a bit of excision surgery'. Very important to realised that the treatment you get offered for endo is commensurate with the experience of the consultant you are seeing, and this differs hugely.

Definitely recommend you have a look at Mr T's website. A book I recommend too is "Stop Endometriosis and Pelvic Pain" by Dr Andrew S Cook. He also advocates like Mr T that all endo must be removed. Dr David Redwine (now retired) was the top guy in the US and has a website "Endopaedia" as he wanted to leave the benefit of his work for all. Dr Redwine in the US says that the reason endo is generally thought to always come back is simply because most surgeons do not remove it all. They do 'patch' excision and it is the endo that is not removed that later becomes troublesome leading to multiple surgeries. If it is all removed it generally has a good outcome.

I hope this helps as I remember only too well the trauma I felt when at the stage you are now finding yourself at.

All best wishes x

[kaflaf]

So helpful to read this and all the replies, thanks. I'm a newbie, first laparoscopy 10 days ago for endometriomas and surgeon found similar mess. The endo is from my rectum to diaphragm. He also said it was on my liver, which I haven't read much about on these forums. I've been lucky in that I haven't had that much pain. Upper back and chest pain is probably the worst symptom but I didn't realise it was connected until now. I had first 3 month injection of Prostap straight away and have the option of Livial if required. It is all a bit scary and no future plan other than wait and see how you are in 6 months.

Totally understand the "feeling on edge" and just wanted to wish you well. xx

[cancan1 in reply to kaflaf]

Thank you kaflaf

[piper7]

yes mr trehan is the ONLY surgeon to do total exicison you will not get that at anyother hospital, also many 'expert' nhs doctors still suggest major answers tat mr trehan, from my research does not advise. def a major problem that he is the only one to do it ii`m praying I get the surgery m him)

thank you to the person above explaining that 2 years on your still all good, gives me hope!!

[cancan1]

The problem I have is that she couldn't see any endo there, had a period just before the surgery. But there was lots of adhesives ans scarring there which have attached everything together in a big ball. Due third injection of zoladex on Wednesday. Still having some pain and cramps and problems with my bowel which haven't eased. X