Slowing down Endometriosis

[PandoraEx]

Hey, sadly a year after my major surgery I can feel my endo coming back. I'm not currently taking any med apart from the 6 months zoladex I had when I first had my op. Does anyone know if there is any research into what med will slow down progression?

I spoke to my gyne surgeon not too long ago and it wasn't really much help, because I said I wanted children and my next op would be to take it all out they just focused on how I should be having ivf ASAP rather than what might help ij the mean time. I understand what they're saying but we are about to go into another recession and its really not the time!

[Endo35]

Pregnancy is brilliant for endometriosis, it is the only time I have ever felt "well" if you have had 6 months of zolodex you have to have a 6 month break as its only licenced for 6 month treatments, some combined pills do also help at double dose along with methanamic acid tablets these have to be prescribed by a specialist. The combined pill turns the ovaries off and a month of methananamic acid will help with menstrual flow amd calm it down, this should buy you some time if you feel that now is not the right time for babies!

[Mrs90]

I agree Pregnancy has given me 7 years peace from the symptoms. But it’s been a hard slog to get pregnant. I appreciate the possible recession but I also appreciate the heartache of not getting pregnant. Delay is your enemy. I hope you can find what works but if you can find a way don’t let money stop you trying to be a parent.

[BloomingMarvellous]

You could look into using either NAC or the Nice recommended Sodium Dicholoroacetate ( Scottish Double blind studies ) The latter seems to have useful evidence regarding successful use in slowing and assisting those who want to get pregnant. Worth a look.

[C_rin_G in reply to BloomingMarvellous]

Hi, do you know if doctors/gynaecologists will provide sodium dicholoroacetate or can you buy it over the counter? Have you tried it and had good results?

[BloomingMarvellous in reply to C_rin_G]

It would be a prescription. It’s not something I’ve personally used.

[BloomingMarvellous in reply to C_rin_G]

Best to get the technical data from the trials which were stopped early because it was proving so effective that they moved early to approval.

[C_rin_G in reply to BloomingMarvellous]

Thank you for the help, you don’t possibly have any links do you. I’m at the gynaecologist on Thursday so would be interested in showing him these. The last thing I found on it was from 2019 where they were starting clinical trials and a bbc news article of a girl saying it really helped her and then nothing since then

[BloomingMarvellous in reply to C_rin_G]

Dr Google should provide. The trials were in Scotland …

[BloomingMarvellous in reply to BloomingMarvellous]

Since then it’s been fast tracked by NICE so your consultant ought to be able to access appropriate information for you.

[C_rin_G in reply to BloomingMarvellous]

How do you know it’s been fast tracked by NICE? As I can’t find anything relating to it on Google

[BloomingMarvellous in reply to C_rin_G]

Reports at the time and since. Really suggest you talk to your consultant hereon in.

[Avourneen]

Sadly I don't think there is much that slows it down. Progesterone is meant to balace the excess oestrogen a bit and is given to try to slow endo down. ivf treatment can make endo worse because it involves having to take large doses of oestrogen which is a big driver of endo. So look into this carefully before you go ahaed with it and consider how bad your endo is before you start. We desperately need more treatments, but research for new treaments doesnt seem to be geting much finding or public support.

[Emmaja_ne]

It took me over a year to get pregnant but them 9 months were the best in terms of my symptom's but now my symptoms seem to be 10x worse. I’ve now started the combined pill taking it back to back and I feel like it’s definitely making a difference already. I’ve also gone a low gluten diet to see if that does anything.

[hamesha]

In my experience pregnancy made my endometriosis worse. I had a c-section and 4 months postpartum my endometriosis symptoms were extremely severe. After going to my gynae and having a few scans turns out I had new cysts growing and one had burst inside me. 7 Months postpartum I ended up having another keyhole surgery. In which my consultant said my womb was completely stuck to my c-section scar by severe midline adhesions 😩. Not to mention cysts and polyps too. He removed what he could but part of my womb is still stuck and for that i would need a laprotomy in the future.

I have heard and i will be trying it myself (pregnant again- so post birth) that acupuncture & cupping helps slowing down endometriosis. It removes toxins and helps breaking down adhesions.

I had 3 miscarriages & then a laproscopy. I was told to try naturally for 6 months and if nothing happens then I would have to have IVF. On my 6 month post op, i went and did acupuncture, dry and fire cupping and womb massage. The following month i concieved naturally.

Sorry for the long message, hope this helps x

[CryBaby91 in reply to hamesha]

Endo loves a cesarean section! My bowel was fused to mine surgeon said it is very common with endo and c-sections. Such an awful condition! The irony is that if you have endo you are more likely to need a cesarean, so you end up in this vicious cycle then. Scary that endo loves surgical scars in general, yet the main form of treatment for us is surgery! Such an oxymoron really.

[Linley]

Mefeminic Acid dampened my Endo down but I was older than you when Endo was diagnosed, good luck🤞