Treatment choices for severe endo (had first appt with BSGE centre at last!)

[Purple_Badgers]

Hey everyone! Hope the sun is shining where you are today 😀

I finally had my telephone appointment with someone from my chosen endo specialist centre, after a year of waiting, several cancellations and a last minute change from face-to-face back to a telephone call…

I had an MRI in April to check the extent of my endo issues, and as suspected the picture is not a pretty one. There is significant bowel involvement and a cyst on my left ovary. There are lots of adhesions and scarring.

My 4 options are: 1) Do nothing/manage with painkillers etc 2) Try hormonal contraceptives 3) Try chemical menopause 4) Opt for surgery

At the moment I’m leaning towards option 3, because although I can sort of manage as I am, it’s only because I gave up work, have a supportive partner & helpful teen sons and lead a very boring life! I would like to have more energy, less pain, more time feeling well enough to get out &about, to be able to drive comfortably and maybe even to feel well enough to go back to work. I don’t think more/different painkillers are going to help in that way. I never got on well with contraception in the past, which gave me terrible mood swings and migraines.

If they were to operate on me, I have been told it would be quite extensive - removal of womb & ovaries with bowel resection and would carry quite a high risk of bowel damage and needing a stoma due to how it is all stuck together. This is definitely last-resort, desperate measures territory for me!

So, do you think chemical menopause seems the right choice at this point? If you’re currently on this treatment, which medication are you having and how is it working out for you?

Love to all xxx PB

[Jade2006]

This is sounds so similar to my case.I haven’t been told I need I need my womb removed .

But I had surgery last year ( not by the right surgeon) .

I now only have 1 ovary due to a very large cyst being removed, I feel like for me I need the surgery as my endo wasn’t dealt with , and I know the cyst can grow and take my only ovary if just left , it won’t go away.

He said it’s a 10% chance he would have to remove.

It’s hard to get your head round it all .

[Steffers]

Hi there, wow a lot to take in and think about I’ve just had my third Zoladex injection…. Has reduced the pain and even had some pain free days 🥳

I’ve been ok so far (not having any hrt) hot flushes and night sweats are like nothing I’ve experienced before, have a fan and cold flannel , cold water to sip but I can put up with that if means the pain is reduced/stopped

I’ve not had a diagnosis of anything, I go back to gynaecologist in July to see what the impact of the Zoladex was for me and then go from there

Hope this helped 😊

[Purple_Badgers in reply to Steffers]

Thank you! I guess it’s all a balancing act… the hot flushes & night sweats sound really unpleasant, but I could probably put up with all sorts if it meant less pain. Good luck with rest of your treatment - hope you get diagnosed & looked after xxx

[LME5]

Hey! To be honest, most gynaes use "bowel damage" as a way to scare women off operating. And it works with almost every patient! I'm not trying to dismiss potential risks associated with bowel surgery, but a competent bowel surgeon should be able to help you, without damaging you further. You also have to take into account the risk of leaving your condition untreated - drugs only help "tame" your condition, and not always successfully! That means there's a chance your endometriosis will worsen regardless of you taking hormone contraceptives (happened with me and other endo patients I know), or chemical menopause - not to mention the side effects of such drugs.You've held on this long, waiting to see endo specialists. I highly recommend getting second and third opinions on the best course of treatment. I've seen more "endo specialists" than I care to admit, including those residing at "world renowned NHS endo clinics" in London. It took meeting with a specialist who didn't try to scare me off with surgery for me to know who to trust with my health,

Hope that helps x

[Purple_Badgers in reply to LME5]

Thanks, LME5. They did sound quite reluctant regarding the surgery… it probably is because they don’t want to tackle it (and about keeping their waiting lists down, maybe?). To be honest, I’ve already experienced what happens when endo is left to progress, as I had an emergency bowel resection due to endo at the start of 2021. I also have a feeling that my (unsuccessful) IVF treatment a year or so beforehand may have caused the endo to flare up. Which adds to my worries about hormone treatments in general… Geez, there really is no easy answer! I think you’re right about getting a second opinion, but I just don’t know if I’ve got the strength to fight xxxx

[LME5 in reply to Purple_Badgers]

I wouldn't be surprised. They've been reluctant to take on patients for surgery since pre-covid, let alone now. I'm sorry you had to go through an emergency surgery for bowel resection. I can't imagine how stressful that must have been. Not to mention the challenges of IVF.I decided against freezing my eggs because the doctor informed me about the risk of endo flare ups.

These aren't easy decisions to make. You've been through a lot.

Take it easy on yourself right now. Spend some time taking care of you and thinking about your options. You will get your strength back You're worth it. You deserve the best treatment, always reminds yourself of that xxx

[Moon_maiden]

HiGreat you had appointment at long last, not so on the options. Sorry it wasn’t better news.

Zoladex didn’t help me, but you can only try. Although I’m not sure if the Endo/adhesions were the cause of all the pain.

It’s not an easy choice, the hysterectomy did help pain in that area. When further op was more for bowel adhesions, I gave carte blanche as I wanted rid of the pain.

Potentially there is another option although no one would prescribe off licence for me, the treatment they’ve been researching in Edinburgh. The last I heard they were looking to do more research and opening it up on a wider scale. Sounds as though your consultant has given you a choice and decent enough to explain. Maybe he could enquire about this as an option. From everything I’ve come across it seems to have worked well.

It’s incredibly hard because we want to do more, I’m desperate to get back working, understand how you feel 🙂

[Purple_Badgers in reply to Moon_maiden]

Thanks, MM xxx I did learn that there’s no more dangerous-looking masses like the one that blocked my bowel, so it’s a relief from that point of view!Similar to many other people on here, my head is spinning with the choices and risks. I’m tempted to stick my head in the sand because it’s all too much… do nothing, carry on “coping” as I am… but it’s hardly a life at all. Maybe I will try the menopause treatment, then find myself asking for the surgery anyway. Ugh 😩

Might be worth asking about the Edinburgh trial, can’t hurt. I’d be willing to be a Guinea pig. To be fair, endo is such an awful disease that the whole thing feels like a big experiment for all endo patients 😞

[Moon_maiden in reply to Purple_Badgers]

That’s great no masses 🙂 some relief for you at least. Gets scary when that’s involved.

I’d agree, most have no clue and haven’t done anything to make inroads. I was told to give it 2/3 injections before it might work. It does work for some, it’s their current go to. You could start them, let them put you down for surgery, for say four months and you can always back out if injection works and could continue with those, or you don’t want the surgery. If that makes sense, it’s late 🤦‍♀️

Worth a shot about the Edinburgh stuff. On the Endo uk YouTube there should be a talk on there from the Edinburgh team. Might be a link from the website as well. There’s various articles out there.

Take a few days/week, however long to think about all options, good bad, etc. I found writing it down helped.

Here if you want to chat. 🙂

[Ugnele]

Hi, I have stage 4 endo that affected my bowels, bladder and diaphragm. Can I just note first of all, from just MRI scan, the extent of endo cannot be seen. They normally do “diagnostic” surgery to map the extent of organs affected.

My bowels were all stuck together and stuck to pelvic wall, I had ingrown endo into my bladder, and also on diaphragm which could only be accessed if they looked behind the liver. Anyhow, I had this surgery in 2018 with multidisciplinary team that consisted with gynaecologist, bowel specialist and urologist. They removed all endo without the need of resectioning bowels or cutting into my bladder.

Besides, before such surgeries they always put you on chemical menopause.

The surgery did change my life for few years, as I didn’t want to remain on hormones post surgery and trying to get pregnant

[Purple_Badgers in reply to Ugnele]

Ah thankyou for sharing your experience. I’ve already had an emergency bowel resection due to endo causing a total blockage, ironically whilst I was on a waiting list for a diagnostic lap! I’ve heard that the emphasis is moving away from surgery as the gold standard for diagnosis, as those with enough expertise can use physical exams/tests and interpret scans well enough to diagnose endo without opening the patient up. (Though I’m sure there could still be some surprises at the time of surgery!)I’m so glad your surgery went well and gave you some relief for a while 😀 hopefully you’ll achieve successful pregnancy next too 🙏

Perhaps I am heading for surgery eventually, whatever happens… xxx