Stage 4 Endometriosis ☹️ Want someone to talk to?

[faith948]

Hi,

I have was diagnosed with stage 4 endometriosis in April 2019 after suffering for years with severe pain, constant bleeding and many other symptoms!

I had a laparoscopy and when I woke they basically told me that it was too severe to remove and that they would have to have an MDT meeting to discuss what to do next. I had my MRI scan in June and my next appointment with them is in August. They haven’t really kept me informed, I think it may be on my bladder, I had to go stay in hospital a few nights last month as the pain was so severe and I couldn’t wee. They have gave me prostap injection but his has only stopped my bleeding and not the pain! I am on zapain, oramorph and also antidepressants and anxiety tablets as this and other things have took there toll on my lately!

I just feel like I am left in the dark and it is so worrying as I don’t know an awful lot about it only what I have searched. I am mainly worried about having baby’s as I am only 24 but am not with anyone to have a baby soon. I just wanted to talk to other people with stage 4 and what is ahead and if it gets better? Xx

[Peren]

Hello there. Sorry to hear that you are struggling.

Can I ask if you are being seen my a BSGE accredited endo specialist or general gynae? Number 1 - if it’s not a specialist be a look on the BSGE website and find a specialist local to you and ask your GP to refer. you. As you have been diagnosed you have the right to be treated by a specialist. General gynae do not have the skills to treat you correct.

Everyone who has endo has a very different experience, it’s a very individual disease so try not to focus on the horror stories you read, once you’ve had the correct treatment you should be able to find your new normal and learn ways in which to manage your condition.

Rest, heat, relaxation all help.

With regards to fertility, again this depends on any damage caused by the endo-with any luck you’re ok on that from but if not there are so many people on here who are stage 4 and have babies. I wouldn’t stress yourself with that until you have all the facts. The stage doesn’t tell you what organs have been affected, you won’t know that without seeing your notes or surgeon letter to dr.

[KGDI]

Hello Faith948,

I’m sorry to hear that you’ve been feeling so unwell. I’ve had endometriosis for over 2 decades. I’m stage 4 and have adenomyosis, pain syndrome, IBS and neuropathy as a result of my endometriosis. I’ve had numerous cysts, endometriomas and organs removed because of the condition. Mine was quite complex too with endo on my bladder, intestines and across the entire pelvic cavity with a high level of adhesions and deep rooted nodules. So I understand how distressing this can be.

If your Gynaecologist informed you that your case will be discussed at MDT that’s completely normal as every single case seen in a clinic is discussed in this forum. It’s standard practice. Your Gynaecologist May want the opinions of other surgeons and radiologists before make a specific plan that fits your condition at this point which is a good thing. You need to chase the hospital and find out your next appointment to see the Gynae team and ensure you meet with the same person for continuity of care.

In terms of depression, this is a common side effect of menopause induced by the prostap injection as your ovaries are switched off. Because I’ve been on it too I am aware it takes up to 3 months to really start to shrink your endometriosis. For me, the bleeding didn’t stop as soon as I went on the injections so I’m glad that this has worked really quickly to stop your bleeds. That’s a positive sign.

In terms of managing the disease and ongoing symptoms, I would say diet and exercise can be extremely helpful especially now that you aren’t bleeding. Being on a plant based diet and exercising helped me so much including overcoming depression, managing pain (along with analgesic) and recovering from multiple surgeries.

I too have pain episodes but over the years these have been significantly controlled because of my diet and exercise plan. You need to find something that works for you. I tried a lot of diets that are well publicised but i realises that my body wasn’t tolerating these well so I cut out gluten, diary, meat, poultry, eggs and wheat. It made me feel so much lighter and because I had endometriosis around my bladder, intestines and bowels etc. Being on a plant diet helped immensely. I was always active with the exception of days when in pain so I decided to come up with my own running plan. That meant I was running a few miles in the beginning every week when I wasn’t in pain and over the last decade increased this. Having had numerous cyctectomies, hysteroscopies and laparoscopies to excision the endometriosis, the diet and running routine played a huge part in my post-surgery recovery too as it made things easier. This also controlled my symptoms which meant I was able to limit my morphine/codeine intake. I tried every contraceptive pill and painkiller possible and since I was a teenager went through boxes of them. What I’ve learnt over the last 2 decades is that this complex condition can be tamed even when it’s at its peak and slow down its progress if you get a handle on the symptoms and that means clinical intervention alone isn’t enough. I found the holistic approach combined with the clinical intervention really beneficial.

Do think about the other alternatives you can use because it does help to find the right thing for you. I know things always appear very demoralising when you are in pain, I’ve been there. But please don’t loose hope. You can overcome this debilitating pain.

[Northernmonkee1]

Wow, you are young to rule out surgery. Like the other ladies said make sure you are seeing an endo specialist. I have stage 4 I got pregnant I think in part because I didn't know I had it. I have adhesions and my left ovary is stuck to my bowel and I have adenomyosis.

I have been told surgery is too risky. I would think about getting a second opinion and seeing a fertility specialist. I have been put into an early menopause by the jabs but I am much older than you. Do you have access to an endo specialist nurse? Your pain is poorly controlled so you need more input. Your endo isn't well managed you need to tell your endo specialist or endo nurse. To get to grips with the basics I read Endo: the experts' guide ..... by Prof Andrew Horne and Carol Pearson. Surgery is not always the answer but I think you need more info. An endo specialist nurse would have the time to discuss your worries and concerns mine literally saved my life and I'm campaigning via my MP for better access to them. Good luck and take care xxx

[Hidden]

You sound like you're in a similar situation to me at the moment. I was diagnosed in that past when I was 29 and put on cerazette which worked well for me up until about 10 months ago. I had scans which identified endometriomas on my ovaries so i had a laparoscopy in June.

Like you I woke up from the surgery to be told they hadn't done anything as my insides were too bad. I had to chase a follow up appointment and when I did was told I have severe endometriosis and basically everything is stuck together and there are 10cm cysts on both ovaries. They have significant concerns about my fertility - not helped by the fact I'm 36 but only been in this relationship for 6 months and can't exactly ask him to start IVF with me so I know where you're coming from on the baby front and that is distressing me more than anything at the moment.

I had an MRI last week and am going to be discussed at the MDT on friday. The consultant is going to then ring me with the outcome or I will ring his secretary again.

Did you ask for copies of any letters sent from your hospital to the GP? And are you under a specialist centre?

Suzanne x