Endometriosis and ttc again.

[Mich2020]

Sorry this might become a bit long but I'm feeling pretty crappy so wanted to see if anyone had been in my situation and have had a good outcome.

So when I was 16 I gave birth to my son, a long 36 hour labour lots of internals and ended up in a emergency c-section. My csection wound got infected two days later and I had to be readmitted. A few months went past after recovery and I was in horrendous pain, after lots of dr appointments and hospital appointments they diagnosed me with endometriosis. The pain carried on, I had to have two operations to remove scar tissue over a few years.
When I was 19 I had my daughter. Normal vaginal birth everything was fine.
The years went by and the pain was creeping back, I got admitted to hospital when I was 23. They basically told me that a hysterectomy would be the only way that the endometriosis would ever get any better. They told me to have a long think about that and gave me some strong pain relief but never operated again.
Now 5 years later I'm sat here taking way to many Codeine to try and help with the pain, a new partner of nearly two years and we have been ttc for about 15 months. I've had referrals from the drs and I have been seen by my gynaecologist(which was the same from the beginning) he has said my case is now a lot more severe than it ever has been and has put me on the waiting list for a lap and dye. This was back in December but with all the covid-19 going on I have been set back and probably won't get into have the op this year ☹️ I have used opks and I have regular 28-31 day cycles. I know I'm ovulating (well I like to think I am) I have all the pain when it's that time and my tests are positive.
I'm getting myself all worked up that I won't be able to conceive again and that my time is over. I have had a conversation with DP this morning about giving it only 3 more years and if nothing happens then I will go ahead with the hysterectomy. I cannot bear to be in this much pain anymore.
I just want to hear some stories I guess, I would like to talk to someone that's been in this situation and had a positive outcome. I'm obviously very happy that I've managed to have two DC already but me and my new partner would love to complete our family together (he's had a child of his own too) so I know we are both able.
Sorry if this doesn't make any sense and has rambled on a bit but I just need some support or something to make me feel better.xx

Anyone??

Has he been tested?

No but he has his own child from a previous relationship x

I do feel for you (also diagnosed with endometriosis years later after onset of this). Endometriosis is an awful thing for a woman to have. As you are well aware also it can recur. "Mild" forms of this can and does cause great pain, when endo becomes more chronic it can cause lesser pain.

Is it possible for you to get in touch with the gynae again by phone or at least speak to his secretary?. If you do have a laparoscopy how confident is this surgeon that he will be able to treat the endometriosis that is there?. You really do not want any more surgery here than absolutely necessary.

It may also be an idea for you to get a second opinion from another gynae at one at an accredited endometriosis centre www.bsge.org.uk/centre/

You may well want to have a look at this website too; www.endometriosis-uk.org/

Do talk at great length with a gynae directly about a hyst in terms of pros and cons of such surgery. On a wider level I would think long and hard about a hysterectomy because some endometriosis patients do not get full relief from pain following this surgery (there is plenty of anecdotal evidence suggesting this). If endometriosis is elsewhere (like on your bladder wall or on your intestines for instance) a hysterectomy will not address that problem.

Thanks for you reply @AttilaTheMeerkat
My gynaecologist is pretty confident he can remove all of my endo which is visible on my scan, although he confirmed my left tube is partially blocked so he may not be able to remove endo on there without damaging it so it may have to be removed, in which case I'm going to make sure if they can save my eggs I will ask him to do so.
He's also going to put dye through my tubes to make sure there's no blockages there. He's definitely concerned as this is the most 'severe' case he's seen and he was pretty sure that I was going to be a more urgent case (before this whole lockdown happened)
I will try and contact him or his office in the coming week as it's getting very depressing now and not being able to even get through a day without pain relief is very frustrating and not convenient when I'm on the go at work 5 days a week.
I will make sure I discuss the hysterectomy throughly and I will not jump into anything. I will discuss my other options but I know as I said in my previous post they did say that could be my only option if I was sure that anymore children was off the cards. How on earth at the age of 23 was I going to make that decision. I wasn't able to do that even now the thought of it really scares me and I will make sure I cover all bases of that before agreeing to anything.
It's an awful condition to have and I do hope one day soon I will be able to complete my family without having to make the biggest decision of my life before I get the chance to do so.xx