Advice on Endo treatment please

Hi,
This is my first post, My name is Janine, I am 31 and have two beautiful daughters(aged 5 and 3). I was so thrilled to find this forum as my endo has become increasingly worse over the past twelve months. I have learnt a lot by reading all the posts here. Two weeks ago I underwent my first lap surgery which resulted in the Doctor removing my right tube and separating my uterus from my bowel. The Doctor has referred me to see Dr Mathew Morgan to assess the bowel issue as I still have a blob of endo in there somewhere(I have an appointment in two weeks time) He also wants me to comence 6 months on Zoladex while I debate wether or not I want to proceed with a Hystorectamy (inc removing ovaries) pls excuse my spelling. I don't particulary want to have any further surgery and from reading previous posts I don't want to commence the Zoladex either. At this stage I am going to speak to my accupunturist and I have an appiontment with a recommended Nauropath. Any advice you have is very welcome as I would love to find a solution other than surgery and drugs.
Thanks,Janine

Hi Janine

I just looked up the dr you refer to and see he is an ECCA specialist which is a good start. Is the gynea who did your lap an ecca dr as well? I would seriously go down that path before considering zolodex (which I had and had no relief from) or a hysterectomy.

You might not get much help or relief from natural therapies and unfortunately sometimes you really need the surgery. when endo gets as bad as you describe you really need to get someone to get in there and clean it right up.

Just curious, how did they diagnose your endo if you just had your first laparoscopy?

Tahl

I had bowel surgery with Matthew Morgan, he is so gooodddddd, him and Dr Michael Cooper, who is an ECCA surgeon, with two ops, have now basically 'cured' me and I only have a 10-15 per cent chance of my endo coming back.. Matthew is very sweet and good looking, as an extra bonus. He is very experienced and knows exactly what is going on. I had my op on a Wednesday and was home on the following Sunday morning. I was eating by the friday night, they removed 20 cms of my bowel... I have a scar which is 5 cm long on the left hand side of my bikini line. Try not to be to concerned, from someone who has been there and done that with this surgeon, you are in great hands.... 'Joels Girl' another forum member had surgery done to with michael and matthew and was very happy, she is now pregnant.

As worrying as the surgery is, it will be worth every moment of it... You are the same age as me, and my recovery was very very quick.. forget the accupuncture and the naturapath for now, get your bowel done and see how you go...

all the best and keep us updated

leis x

Having suffered with severe endo and had 12 laps, used zoladex and the like - I wouldn't recommend zoladex - it was dreadful for me. Best of luck with finding relief :)

Just another thought

My surgeon did say, we can remove it if you want or leave it... my comment to him was 'I am a nurse, i know these things if left can turn nasty (cancer), you can't sit there and tell me that there isn't a chance of it happening' he agreed and that was the final words i needed to hear to make up my mind.

Leis x

Hi All, Thanks for the replies.
I have had painful periods my whole life and my mother went through all this when she was my age, as my symptoms worsened my GP sent me for a ultrasound which picked up a large mass on my ovary and something with my endometrium?- I don't have the file here with me. Anyway my GP sent me to see Dr Chang in campbelltown who performed the lap. I think his concern is that even if I have the bowel surgery I am wasting my time if I plan on leaving my uterus & ovaries in, as it will all just come back. I am terrified of the thought that if I choose surgery I may end up with a colostemy bag(from the bowel surgey) or I will have to endure menopause( from the hysto). So at this stage I am stalling and trying to find something to cling to as an alternative. I will see how my appointment with Dr Morgan goes maybe he will give me confidence in surgery. I will keep you updated. Thanks again, Janine

Hi Janine

If the surgeon who did your lap isn't a specialist in endo I would seriously consider seeing one of the endo specialists. Leis sees one of the ECCA guys, Dr Cooper and swears by him. I had extensive surgery for endo on my bowel by ECCA here in Melbourne back in 1999 and while the endo did come back it was not nearly as bad and I now have it fairly under control.

I would not consider a hysterectomy until I had seen someone like Dr Cooper for his opinion. I know I was recommended this option back in my 20's and am so glad that I didn't go down that path, as I am only now 32 and expecting my first baby from IVF. The dr recommending a hysterectomy was not an endo specialist and the endo specialist I have seen have never mentioned a hysterectomy as an option.

Good luck. Leis knows all about these guys, I know less so as I am based in Melbourne and don't go through ECCA anymore, but it is vital you see a gyn who specialises in endo rather than a general gyn.

Good luck.

Tahl... like i stated above, my endo was very bad, just like janes and numerous other girls on this sight, and I don't have a colostomy bag! Infact, i have seen the statistics on Dr Morgans surgery and he has never had a girl with endo have a colostomy bag! There has only ever been one complication with all his girls and that was because the lady bled and she wouldn't consent to blood as she was a Jehovah Witness.

These days the surgery for endo has changed.. good surgeons such as ECCA surgeons will CUT the endo rather than BURN it like the old style of surgeon, cutting it out or in technical terms, 'excising' it, reduces the chance HUGELY of the endo coming back. Like i have stated before, above, my chances of it coming back are 10-15 per cent. I am yet to see it come back! I have also had part of my bladder removed too, and i have no problems with that either....

Please have faith in the surgery. Leaving the endo there in the bowel, will only cause further complications, ie a bowel blockage... I would rather have the likes of the very experienced Dr Matthew Morgan removing part of my bowel with his modren way of surgery than end up in the Emergency Department of my local hospital having emergency bowel surgery by some inexperienced registrar... I will leave the rest to you! Good luck

leis x

hey Leis,
Thanks for the reassurance, this might be the kick in the pants I need.
I am guessing Dr Morgan will need to do a camera in the rear procedure before he can advise me on the anything?

So basically, if they 'cut' (I will have to check) my endo out in my lap a few weeks ago and I have the bowel sorted out by Dr Morgan, you think I should be in the clear?
My surgeon gave me the impression that my ovaries are the source of the problems - producing too much eostrogen? (excuse spelling) and will continue to do so?

I think I will talk to Dr Morgan and then might have to contact Dr Cooper.

I am fortunate to say we are happy with the two kids we have and aren't having any more. My main concern is keeping all my bits so as not to have to endure menopause. One reason is I suffer from migraines and I've heard menopause can worsen this along with a lot of others things.

After reading other posts I am not so worried about my last period being just as painful as prior to the lap. Although they are still only 3 weeks apart. I am hoping getting my bowel sorted out should help with all this.

I am still keeping my naturopath appointment though, interested to see what he has to say about my health in general.

yes Dr Morgan will more than likely do the colonoscopy prior to your op.. I had mine done by him at the Newland street Clinic in Bondi Junction. It was really good there, and his female anaethetist is lovely. Keep us updated on your progress, and yes if you can, get an appointment with Dr Micheal Cooper, and check out the ECCA website.. google ECCA...

regards

leis x

OK so I went and saw the naturopath and all he can treat me for is the candida I apparently have in my digestive system. I have read in books & online that this is common in people with endo but it was only a slight infection and I came up clear in all the other test he did- parasites. metals, allergies. He referred me to another Doctor who wants to treat me with herbal remedies and vitamin drips? I think I will hold off until I see the bowel surgeon.

I went and saw Dr Morgan and he said yeah I do require a bowel resection. He isn't going to scheldule any surgery until I see Dr Cooper which is in another couple of weeks.

Glad you have got an appt with Dr Cooper too. His secretary Kathy is a star! She is lovely. I am going back to see Dr Cooper on the 29th March for my 12 monthly check. God I can hardly believe it has been nearly 12 months since my op... I am 1 million per cent better.... You won't regret your op!!! Keep us updated ok!

Leis x