Endometriosis UK
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stage 4 endo help???

I have recently had my first laroscopy 6 weeks ago, they thought it was just to remove a cyst on left ovary but turned out I have stage 4 endometrosis affecting both Fallopian tubes, ovaries, bladder, uterus, tailbone and bowel. They have removed everything possible but are referring me to another specialist to treat the bowel endo. Does anyone know what this will invole? I am terrified as have heard horror story's. I am 25 and childless, I have been told due to scar tissue and blocked tubes I am infertile, this has put a huge strain on my life and relationship. I really struggle to deal with the depression and find most days crying since being diagnosed along with extreme pain. I am waiting on a referral to an endo specialist and also someone to treat bowel. Anyone that can help many thanks.

3 Replies

That's my experience too. However I would urge you to speak to your GP about the depression side of things and get treatment for that underway asap. It is not surprising given the emotionl jolt you have received - but also is a very common result of having surgery generally, and post op depression should not be ignored.

If you developed an infection after surgery you would get treatment for it - and the same applies to depression.

Finding out you cannot have kids naturally is a bereavement process and it takes time to come to terms with that but all is not lost - you are still young enough to have assisted reproduction.

I was 43 when I found out stage 4, but still had clear tubes and 1 working ovary - I can't have kids because of a developmental deformity of the uterus, not spotted till i was too old for IVF or adopting, and my finances were in ruins so surrogacy was out of the question too. so in my case it really was the final nail in the coffin.

I am fine now. Once you accept and come to terms with the fact it isn't your fate to be a mum, there are so many ways to be involved in the lives of kids who need a super Aunt who can help raise them.

But you're not there yet - you do still have options and your young age on your side. They will be tougher options than being able to conceive naturally. If your ovaries are still working and your uterus provided it is the a healthy shape, will never be compromised by endo- so Assisted reproduction is an option for you, so too is surrogacy or adoption. You have plenty of time in which to save up for more IVF treatments and prices are coming down year on year as technology is improving all the time.

There is a great deal to be optimistic about. I know you will find it nigh on impossible to see the positive sides of this while in the depths of depression and overwhelmed with grieving right now, which is why getting your mental health recovered is a priority before you decide whether or not to have more surgery on the bowel too.

My op was a biggy and I still need work on remaining endo in the bowel.

But my previous op took a year and a half to recover from and I am not yet ready for a repeat of that. I can still go poop every day - with pain and a great deal of discomfort at times and I have to be very careful to avoid getting constipated, and the endo still bleeds out of my back passage when it is active, but I can and do live with it at the moment like this.

There may come a time when I can no longer poop without extreme difficulty - that will determine when I go for the next stage of the surgeries.

I have to have another op in under two years anyway, as there is a mirena inserted in my deformed uterus that will need replacing, and there is an ovarian cyst that could do with coming out and a cervical polyp that certainly needs removing, so I am not done with surgery completely, but the bowel op is likely to need another open surgery and lengthy recovery which is why for me now is not the right time for it.

When you see the bowel specialist - that's the time to discuss with the colorectal surgeon what type of surgery they think you will need. Ask whether it will be keyhole or open surgery.

Ask what the chances are that the bladder will be affected by an open surgery. (it may need moving out of the way which can cause bladder spasms afterwards and give you a lot of difficulty being able to pee - this was for me the longest issue to recover from 17 months of bladder spasms).

Ask the surgeon in their opinion whether the surgery could wait or even if it is necessary at all?

It is an ideal situation that all existing endo is removed - but it is possible to live with endo still in the body. You need to know more to be able to weight up your options. Bowel surgery is a complicated business and the risks of surgery may outweigh the risks of not having surgery and leaving the endo alone but managing your other issues like periods and pains with medication instead.

Bowel surgery or Bowel endo won't impact on your fertility issues, it may prove a extra complication of pregnancy as the baby grows and make loo trips tougher, but your surgeon will be able to give you a much better idea about what options you do have from the scans and work that have already been done.

so you need to get help with the depression side of things as the 1st step.

Then with a clearer head talk to the colorectal surgeon about the type of op he/she thinks you will need and the possible complications and implications of surgery and also whether they think that surgery can be postponed till after you have had a decent go at IVF or if the need for surgery is more pressingly urgent.

You do have a say in what treatment options you go for. At the moment you will be feeling a complete lack of control over your own body, but that is not the case. There are a lot of issues to deal with and come to terms with and you need to take your time to recover from the current op, that includes mentally and emotionally and physically. Use the time to speak to the specialists in assisted reproduction and the colorectal surgeon and ask questions, research for yourself and when you are armed with a lot more information you can then begin to form some kind of action plan about what you want to do, what you can afford to do and how soon you want to try what ever you feel will be your next steps.

Trust me it will be so much better to deal with all of this once the depression is under control.

antidepressants shut down your emotions. Emotions put huge strain on the serotonin in the brain and deplete it fast. Shutting down the emotional reactions save Serotonin and allows the brain to fill up the empty tanks again. It really helps you think clearly and logically without the emotional side of things getting involved.

You won't cry at weepy movies, you won't find the funniest comedians funny, you wont get stressed or angry either. it puts you in an emotionally bland place which is a strange sensation, not unpleasant, but not one you will be used to. But it really helps your brain to recover lot quicker than leaving it up to mother nature. Recovery from depression can be done naturally over a long course of time if you would prefer to do that and your relationship is strong enough to cope with that, but you should still get assessed by your GP and talk through the options available to you for the depression side of things.

All the treatments, surgery and meds have risks of side effects, and need looking in to , but from my own experience with anti-depressants they can be a god-send and you should look at the depression for what it is. It is a temporary illness and it is going to get better faster with the right treatment.

Very best of luck getting better soon. It is not as bleak a picture as you will be thinking it is now, looking at the world with the view clouded by your emotions and depression. Finding out now that your route to natural conception is blocked has just saved you from months if not years wasted trying each month for a pregnancy that couldn't happen naturally. Now you know right away that IVF is likely going to be the way for you to have a baby - with help by-passing the blockages.

It isn't an ideal situation but it is not without considerable hope either and who knows what technological innovations are just round the corner? You still have some 15 years or more in which to try for a family one way or another. and you don't yet know what options you have regards the bowel endo - but you will have options as we all do when it comes to deciding whether we are ready for a surgery and the recover time or not.

Hugs to you - it's not the best news to get but it is not the end of the world either. Far from it, just needs a bit more planning on which route you take to achieve your goals.

1 like

Thank you so much for taking time out your day to help inform me a bit more about my endo. As you say it is still early days and i'm sure theres loads of options for me in the future. In the meantime I will get to the doctor regarding the depression issues. I think its mostly the shock and having 100 things to get your head around. Thanks for your positive outlook and I wish you all the best!!!


plenty of options lauren dont panic sweetie...me too severe endo with bowel involvement too bad to resection my bowel..anything you want to ask, ask away if i can help i will, one thing i will say is general gynaes do not have a clue...get a gynae who specialises in endo and ask your gp to refer you to them xx


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