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Endometriosis and fertility related chat

(7 Posts)
rookiemater Mon 21-Sep-09 21:06:48

Sorry just posted long message about this on Endo board, but it is so slow to get a response there, that I thought I would post here as well.

Some of you know my history TTC no 2 for 14 months periods got progressively worse, ended up with lap and severe endo diagnosed followed by 6 months of zoladex.

Well consultant said that once i was off the zolly we would have a 6 month window to TTC. I have now had 3 cycles and even with homeopathic remedies, progesterone cream and attempts to modify diet they are getting worse, not so much the periods, but the pain is coming back in between so I'm in discomfort for about 2.5 weeks out of 4 and its primarily around the bowel which the consultant said had a lot of endo around and potentially in it.

I was on cerazette for a long number of years and it must have been effective at the time as although periods were painful when I had them I used to only opt for a breakthrough bleed every 3 months and there was no bleeding in between, so I am moderately hopeful if I go back on the pill then hopefully that will slow down the Endo growth enough for me to at least not need a hysterectomy for well ideally, not at all.

However DH isn't quite at the same stage. I don't think he had realised that once periods stopped then thats pretty much it. I'm 39 so with the endo and my age I don't feel that IVF is an appropriate option for us.

If it was down to me I'd probably stop TTC now and go onto the pill. I'm terrified about the pain getting worse and the situation going back to where it was last year when I was on painkillers most of the time and not being a great parent to DS as I was not feeling good a lot of the time. I don't want a hysterectomy a) because there is no guarantee it will get rid of all the endo b) because I practically had full blown depression on the zoladex so worry that a sudden menopause caused by a hysterectomy will be the same and c) I'm only 39 and I just feel its too blinkin young to have a hysto.

I just don't want to let my DH down, he is keen for DS not to be an only, I'm keen too, but realistically odds of me getting pregnant aren't great and I'm keener on keeping my ovaries. Am i being selfish, are there any other options ?

Thanks, sorry long and rambly.

Vigilanteawarenessraiser Mon 21-Sep-09 21:49:52

Hi Rookiemater,

Sorry you're still having problems. It sounds horrible.

I think there might be other options, but it all depends. Firstly, giving someone excisional surgery (as opposed to laser) including removal of endo on or in the bowel has a good track record for improving fertility - better, so far as I know, than hormonal treatments like zoladex. I don't have my textbooks to hand for references, but so far as I remember the evidence on whether GnRH agonists improve fertility is equivocal. People who have all their endo removed seem to have a better chance of getting pregnant, though it's unclear why removing endo in the bowel would have that effect. So, on the currently available evidence, good excisional surgery is the way to go. It can be hard to get in the UK where lots of surgeons seem to use laser ablation, but there are a few surgeons doing it. Can you try to get referred to one of them for a second opinion? I can't recommend anyone, as my surgery was done abroad, but I've found, for example, this site.

As to whether you might need a hysterectomy, that really depends on whether the endo is in your uterus and ovaries as well, I think. One problem with endo is that the implants can manufacture their own hormone supplies, which is how it keeps going in some women even after their uterus and ovaries have been removed. This varies from woman to woman, but it means that if you have endo on the bowel, removing the endo from the bowel is likely to be a better solution than leaving the endo and removing the ovaries which are driving it - to some extent it may be driving itself, then you are left with a problem. Also, having HRT afterwards can be a factor in the endo reactivating.

If it is in the uterus and ovaries, surgery can relieve it for a time, though it may come back.

I'm sorry the cream isn't working, but if your endo is severe, hormonal treatments often do fail. When I used the cream it retarded mine for some time, but I was a decade younger then. I think if I hadn't used it, I would have ended up really ill a good three or five years before I did, but once I'd become really ill the cream wouldn't have been strong enough iyswim.

My doctor who is supervising my treatment has told me to up the dose of the progeserone cream and the number of days per month that I use it. I wonder if you can get anyone to supervise your use of it and advise on things like that?

It makes me a bit frustrated when I read things like this - there is a lot of evidence to show that good surgical treatment has a high success rate and is better than any medical treatment yet invented, but still people keep prescribing hormonal treatments in situations where they are statistically quite likely to fail and only act to delay your attempts to conceive.
Have you seen this site? I've also found the textbooks published by the Endometriosis Association very useful.

rookiemater Mon 21-Sep-09 22:30:24

Thank you for your response vigilant.

I have just been smearing on the cream myself, as I didn't want to impact on fertility I have only been using it from Day 14 so perhaps that is too limited to have any effect, although I did have a longer cycle last time and thought that maybe the cream was a factor in that.

Dh and I had agreed that I would get another referral to the consultant to discuss options again. He specialises in Endo and when he saw me initially after the surgery said that I was in the worst 5% of cases that he had seen. I was in primarily to get a cyst removed but then he found Endo in the vagina and he thinks in the bowel and pretty much all over. He said he wouldn't be able to remove it all because it was so widespread, but I will certainly ask him about excisional surgery.

I kind of lost faith in him because when we went for the follow up appointment, he was clearly exhausted as we had an evening appointment, but seemed a bit dismissive when I mentioned some of the side effects of the zoladex namely depression, forgetfulness and chronic fatigue. I said to DH that the only way I would go on Zoladex again is if I was signed off work for the entire treatment as looking back I can't believe I managed to keep going, but then realistically I don't want to jeopardize my job either.

Also he was fairly adamant that the endo would take some time to come back and yet here we are, one year on from the original surgery and I am definitely getting symptoms again.

How are you getting on at the minute ? I do appreciate all your advice.

How did you find someone to prescribe the progesterone cream properly ? I think you had posted a link before. Is it expensive ? Sorry I don't want to sound mean but am spending a lot at the homeopath and I'm not convinced its making any difference.

Vigilanteawarenessraiser Tue 22-Sep-09 00:12:49

Glad I was helpful. Sorry not to be more positive about some things. I'm afraid I might be inclined to lack confidence in your consultant, as the ones who are properly equipped to deal with endo never have to leave stuff in there - they can excise it even if it's in your bowel or bladder, blocked your ureters and gone right the way through your diaphragm. So if he says he 'can't remove it all because it's so widespread', then maybe you need to go to someone who can. Also not good, I think, if he's so dismissive of the side-effects of the zoladex. I had decapeptyl and hated it. Did you get offered any HRT?

I'm getting on ok, thanks for asking. I had to go private to get someone who's used to prescribing the cream and yes, it is expensive, but worth it for me just now. It's working for me at the moment because I had such a complete clear out - I'm practically pain free, and am very grateful to the people who have made me that way. I'm ok to up the dose of the cream as I'm not ttc, and I hope it will help to keep me in remission for a good long time.

I never found homeopathy worked for me, and the cost was a problem for me, too.

Sorry not to be more helpful, really.
It's not you letting down your DH - it's your illness letting you both down, and maybe your surgeon, too. You're not being selfish - you're the one who has to cope with the illness, and that can impact on your DS. Plenty of children are onlies anyway. It might be nice to have a second but not essential for him, especially if you're inclining towards sticking at one. I really want to keep my ovaries too - I know I'll only ever opt to get rid of them if I feel I've exhausted every other possibility and life is unbearable. I do have one healthy one anyway, so ought always be able to keep that one. It's only the right one that's buggered.

Do you actually have it in your ovaries, do you know?
Also, it's usually possible to confirm if you have deep rectovaginal endo by doing a rectal exam, or a rectal and pelvic exam simultaneously. The consultant should be able to feel the nodules.

Will find link to doctor if you want it - I got my initial appointment as a Christmas present and have scraped the money for 2 further appts. Worth it for me, as I said, but tricky if you're on a low income at all. I really wish it would become a bit more mainstream and easier to get on the NHS.

Sorry for fragmented reply - I'm a bit tired.

rookiemater Tue 22-Sep-09 20:24:06

Hello again vigilant.

Your post gave me a lot of food for thought. I dug out the notes that DH took when the surgeon first came to see me once he had done the operation.

He said that I have an endometriosis growth from the top of my vagina through to the bowel and it is also in the tube from the kidneys to the bladder and it was not possible to surgically treat this area because of the blood vessels to the womb. I don't believe I have it in my ovaries, like you it is all on one side but I do recall him saying that even on my lhs the ovary seemed healthy.

I do think the consultant is fairly knowledgeable on treatment of Endo and seems to be some sort of expert in helica treatment for stage I & II endo but obviously not doing full excision as detailed in that link you provided. I have made another appointment with the doctor and will ask to get referred again, good news is I spoke to Bupa and they are happy to cover another visit so thats something. Then I can ask him about the excision technique to see what his thoughts are on it.

I was wondering about the Mirena coil. I'm not frightfully keen as it can cause depression and weight gain, but thought it might be a better option than the pill

I would love to have the link to your progesterone cream doctor, we are fine financially, I just feel with the homeopathic doctor that I am forking out ££ per month so I can drink unpleasant tasting tinctures which appear to make no perceptible difference to me.

Thanks for letting me get it off my chest ( just wish I could get it off my bowel)

Vigilanteawarenessraiser Fri 25-Sep-09 19:38:35

Hi Rookiemater,

Sorry for the delay in replying - been busy and very tired over the past few days.

Although you may prefer not to, I personally would be going for another opinion on the best course of treatment. Stage 3 or 4 is a very different animal to stage 1 or 2, and deep infiltrating endo involving bowel/bladder is very much more complex than the more superficial stuff. The first surgeon who looked inside me said I was too complex to treat, though he was prepared to give me open surgery to deal with the adhesions and the less complex patches of Endo only. The second team I saw dealt with the whole lot in one operation, laparoscopically, including a bowel resection - the endo on my rectum had eaten all the way through and already affected my rectal function. They used a relatively new nerve-sparing technique to minimise the damage to my bowel function. Relatively few surgeons could have done it, and they boasted that other teams would have taken 12 hours instead of 7 - but it's untrue to say it's not possible. If your surgeon says you're in the worst 5% he sees, that might also concern me a bit, as people experienced in complex endometriosis deal with these sort of cases all the time.

The other thing that I might worry about in your place would be risk of kidney damage if it is in the ureter, which is why I would get it looked at. There are people who can treat this, despite the proximity of the blood supply to the uterus.

I haven't read up enough on the helia process to give an opinion in it in particular, but I do know that the stats on ablation in general don't compare well with the stats on excision for complex endometriosis. For less complex cases, it may well be better - I have no idea. Will have to read some more.

Anyway, your opinion might be different, and I'm not a doctor. I just worry that too many women who are complex cases don't get the highest level surgery that might help them.
Here are some of the books I read, in case you are curious: a book by David Redwine
a textbook by the Endometriosis Association
and another one
I also look up the individual articles through pubmed.

Vigilanteawarenessraiser Fri 25-Sep-09 19:43:53

oh sorry forgot link: here

Afraid my opinion might not co-incide with yours - but I always feel it's worth researching a fair bit before deciding. My opinion has been heavily influences by my own experience - if I'd gone with the first surgeon I'd have been seriously messed up by now instead of reasonably healthy. I nearly did go with him, and was very lucky that somebody stepped in and stopped me. At the time it wasn't the opinion I wanted to hear, as I liked the first hospital.

Hope you're not feeling too bad.

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