I know very little about what really happens when you have endometriosis. My mind is of course looking on the bad side of everything. “Will it continue to hurt as much as it does already?” “Will the pain get worse and have more complications?” “Will any treatments have side effects?” “Will I be able to have kids?” That, next to the pain, is of course the big question. Really don’t know what to do. Any advice for someone out of their depth? Thanks-
Alli
I was diagnosed last year with stage three.
Finding out has kind of joined up a few dots, there are times where I hurt and feel fed up but it’s not all the time.
I have one child which I conceived naturally and I conceived again following IVM (bit like IVF) but unfortunately I miscarried due to the embryos not developing further than five weeks.
Endometriosis doesn’t mean you can’t have kids but it can make things more difficult, it can mess up your cycles, stuff up your tubes and cause sex to be painful.
Since my lap, my cycles have been regular and periods less painful. Some pain has completely vanished and new pain has arrived.
I’ve decided that I can’t win and that I just need to accept it and live with it. If you met me you would not think I had it, I refuse to let it control me and how I live my life. I’ve had down days of course, I also think that it affects your mood and there are times where you will get angry that you have it.
There may be something out there which could prevent it - I don’t know. Could it be caused by lactose intolerance ? Genes - cultures that don’t consume dairy therefore intolerant ? Who knows.
Hopefully someone works out why it happens and let’s us know.
Xx
Thank you for replying, great to hear that you have your kids. It’s just rather nerve racking not knowing things until they arrive. Was coming to terms with it and not letting it get to you difficult? What did you do to help? I’m trying to remain optimistic but it is, to be honest, a pain in the arse xx
I think everyone’s threshold is different. Anti inflammatories will help - although if trying to conceive avoid them. If you don’t want to take pain killers/tablets take a look at the herbal route, green teas, serrapeptase, acupuncture amongst a few others.
I can’t say for sure if those methods actually work but it’s worth trying if you want to go natural.
Also fix your diet, eat less or no dairy. Try cutting out red meat - see if it helps.
Xx
Hiya, and welcome.
It is a scary diagnosis, made scarier by the huge gap in information and knowledge about the disease. But you can live with it. It is infuriating, and at times debilitating, and frustratingly there's no one-stop-cure or fix to treatment - it wholly depends on the person.
In terms of treatment and how endo will affect you, I and no one can really say. What I will say is the best thing you can do is to trust yourself and the knowledge of your body. To never let a doctor or anyone else tell you that what you're feeling isn't real because, unfortunately, that's probably going to happen at some point.
Many people do have one or two surgeries and go on to live normally. Others aren't as lucky and do have to cycle through meds and hormone treatments and surgeries, but even then there is a quality of life there. There will be up and down days and you will get to know your body in terms of what you can do and when you can do it in the month.
I'd suggest finding a good specialist you can trust. This may take some time, but the people I know who have really come out fighting are those who have medical specialists who really do try their best with regards to the disease. Just being a gynacologist doesn't make for an endo specialist, unfortunately.
Many people have children. That's not to say you may not have difficulties, but look into your options and try not to focus in on it as meaning you definitely can't or won't.
And use this forum for help, whenever you need x
Thank you so much for your reassurance. It took my a couple of years longer than it should have to be diagnosed because they thought it was a multitude or different things instead! Finally found someone who believed my pain to be more than just bad period pains. So glad to have loads of support in this forum though. X
That experience is common unfortunately. It took me several years and I had to go private for the lap to prove it as they wanted to keep me on the pill, which wasn't working. Think the average is something crazy like 7 years x
Hi Alli,
I’ve been living with the condition for over 30 years. Yes I have suffered but I have enjoyed a happy active life. I was first diagnosed at 18 years old, after having my first laparoscopy. They then put me on hormone treatment. Which worked for a while. I had second laparoscopy a few years later. Back then little was known about the condition and I was told I may never have kids. Pleased to say I have a beautiful 22 year old girl!
I’ve gone through times of pain and little understanding from doctors. I’ve been on various pills which have definitely helped but have to change every few years. Seven years ago it really flared up again and thankfully was given the mirena coil. That completely changed my life. Years of very little pain and hardly and periods. Unfortunately I’m now starting to go through the menopause and have had my first bad week. Which is why I’ve just joined this forum.
The treatments and understanding of the condition now are much improved. So if you try one medication and it doesn’t work ask for something else. Everyone’s condition is slightly different.
Best advice I can give you is to talk about it. I would get quite depressed as I felt no one understood what I was going through. I’ve learnt to tell friends, family and work colleagues about the condition and in return have received their support.
Also anything that relaxes you, Walking, meditation, massages, floatation tanks and music.
Diet is also an important factor. Eat sensibly. The more junk food I have the more I seem to suffer!
Less stress on the body will help with pain.
Hope this was helpful
Tracey.
Such lovely replies to your post, I felt a little teary reading your message to be honest as I know exactly how you feel. I was diagnosed with stage 4 only 6 weeks ago and I’m definitely still adjusting.
Your message alone shows that you can handle it, whatever happens. Remember you’ve been through harder times and you came out the other side, you’ll do it again. Xx
Thank you for your advice Tracey! I’m glad to hear that there are a lot of options and treatments. It’s difficult to talk about it at the moment fully to friends and family as I’m worried they may not understand and I will miss burgers and mac Donald’s while I start a proper healthy eating diet! But, like you have, hopefully I will get there. Alli
Just diagnosed with endometriosis
Just diagnosed, what next?
New here, just been diagnosed with endometriosis 
Just been diagnosed stage 4 endometriosis 
Hoping for some support. Just been diagnosed.
