Unexpected Stage IV Diagnosis

[JBee24]

Hello,

On Wednesday I went for a keyhole surgery to finally get an ovarian cyst removed that had been there for around 5/6 years. Unfortunately, when they got a look in, it turns out I have two cysts fused together and endo tissue filling the whole pelvic area/attached to bowel. I am going to get referred for an MRI to see the extent and then referred onto a specialist in the NHS then hopefully surgery to sort it. I am 26 years old and a bit overweight. I sadly can’t afford to go private either.

Does anyone have any general advice on any good podcasts/books/websites I can look into to understand this more?

Also is there anything that I can do to help (I have seen a few things about an anti-inflammatory diet etc). Hoping this would also help reduce weight, I already don’t eat diary or drink alcohol.

I am not on any hormonal contraceptives but have been told to consider taking desogesteral - does anyone have any experience with this?

I have kind of just been left in the dark here but judging by other stories this isn’t uncommon!

thanks in advance

[Olive8000]

Hi JBee24,

Im sorry to hear about your unexpected diagnosis. Im currently reading Heal Endo, by Katie Edmonds and can’t recommend it enough x

[Starry1977]

I was a bit similar. Had keyhole to remove a cyst and found sever stage 4 endo, he dud remove as much as he could but I had it near the bowel and my POD was obliterated. I also then got sent for an mri. This found further disease and adhesions . Because I’m not in horrendous pain I haven’t gone for further surgery and it would probably be hysterectomy. I’ve opted to try contraception. I tried noriday but I bled lighter but just often and felt a bit angry lol. I’m now on desogestral for the second time. I tried it for 3 mths but I was having a bad time mentally and I wasn’t sure if this was making it worse. So I came off it. I didn’t have a period then for 75 days! But when they came back I started struggling not with my period too bad but for 2 weeks after so around ovulation. I was really feeling quite poorly every month. So I’ve gone back on it to give it another go. The stress I was under before has got better so I’ll know better if it effects me mentally. Only started it again new years day so too soon to see. I doubt it’ll work miracles due to my severity but if it stops ovulation that might help .

[Natashica]

hiya, i was also a bit surprised when l got posssible diagnosis of endo not even knowing what is endo! I then listen to a lot of podcast on Spotify ( just type endo) and l probably listen to them all! 😂 all pf them were very helpful as l always learned something new! There are also few pages on instagram, one of them is icarebetter. It is american but even so it does helps. I managed to control my pain by doing daily exercises and eating healthy and plant based diet. You can buy Tom Spector book and you will learn literally everything that you need to know it’s amazing! Please ask me a question of you have any l don’t know everything but l m managing without any pills now and trying more natural way☺️

[GreenViolin]

Hi there. I'd agree with Olive that Heal Endo is a fab book. Another good one specifically on surgery is The Doctor Will See You Now: Recognizing and Treating Endometriosis by Tamer Sechin. I've also found changing my diet in line with Tim Spector's recommendations (as suggested by Nataschia) has been very helpful. Tim's company, Zoe do some amazing podcasts (look for Zoe Science and Nutrition).

I'd also suggest seeing if you can get to see a specialist at a BSGE Accredited Endometriosis Centre, as these are endo experts rather than gynaecology generalists.

[Behind_Hazel_Eyes]

Hi! I am on an anti-inflammatory diet and have found it has changed my life. I am stage 4 with kissing ovaries, 5cm cycst, pouch of douglas glued down and fibroid. Before I was living off painkillers and was in pain half of every month. Horrible. Had no life. I also ended up with an impacted bowel from the painkillers. However, the anti-imflammatory diet helped to lessen and then remove that pain. It was gradual, but over the course of 8 months the pain melted away. It also helped me to realise that sugar is a real trigger for pain. Hence why I have removed it..... only having it on rare occasions at certain times of the month. It means no dairy, no gluten, no sugar, no caffine, no alcohol and no sugar. It is not an easy diet to follow, but it does help. I am currently experimenting with fasting, around 16 hours a day. Weight wise, yes it has helped me reduce weight. I was already on a weight loss diet but this one helped to speed things along even further. I have lost 12 stone in 14 months. I also go for at least a 30 minute walk each day, longer at the weekend. I would also reccommend listening to and reading anything by the gluccose goddess. I found her advice really helped me. Good luck 🙂

[EmB18]

I also found an anti-inflammatory diet really helped with my endo symptoms. We all respond to different things, but for me wheat and sugar were the biggest triggers for flare-ups. Good luck.