Has anyone got any advice for me please? I've just been in for a laproscopy to remove what they told me was a simple cyst on my ovary, only to find out they couldn't remove it because they found endometriosis so they have referred me to a specialist surgeon and are sending me for an MRI.The surgeon said something about it being bad and he couldn't see how deep it went and it may affect fertility so my anxiety is through the roof and googling 'endometriosis' has just made it worse! I'm already 35 and desperately want a baby with my husband but I don't know if it's going to be possible now and I haven't been given any information. I just keep reading about hysterectomys being performed so it's panicking me!
The weird thing is I don't get pain like I've read about. I've always had heavy painful periods but I've just learnt to manage that with lots of painkillers and hot water bottles and when I've been to the doctors in the past noone has ever mentioned endometriosis so I just feel lost, confused and worried!
Sorry for rambling! Any advice would be appreciated - I just don't know where to turn! ☹️
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Madanza
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I can't say I have a full understanding of endometriosis. I think it is a very complex condition but I do think it is good you are being looked at for further assessment.
From a fertility perspective, endometriosis can make pregnancy more difficult but plenty of women get pregnant without any intervention. However if you and your husband have been trying naturally (I couldn't tell from your post) and it has been more than 6 months I would see your GP and make sure you get the relevant tests in case you may need fertility support from specialists.
Do not give up hope. The fact that you have heavy and painful (needing painkillers) periods are symptoms of endometriosis. Periods should not be painful.
Have you looked at makingbabies.com/ nutrition can have a big difference and Dian has helped many people have their ‘miracle’ baby. Did the doctor say how big the endometrioma was? There is a supplement called NAC which has been shown to reduce the size of endometriomas. Plus you need to be eating the right oils, fish oils are best, but a good nutritional therapist who understands endometriosis will taylor to your needs.
hi, something similar happened to me. Went to doctors due to heavy periods. We’re uncomfortable but not like others I know with endo. (My friend had it and used to pass out with pain). They found a cyst and I had a lap to remove. During lap found severe endo. I had a further mri which showed deep disease, adenomoysis and adhesions. I was diagnosed at 44. I did however have my first child at 33 and I would’ve probably had the disease at that stage so don’t lose hope. However I wouldn’t leave it any longer to start trying as obviously age makes it more difficult anyway along with the condition. X
Being at sea with a new diagnosis is quite normal. Getting your bearings will take time and I know that feels difficult with the fertility concerns you hold close to your heart. Try to make a bit of emotional safety space to breathe this all in and find your feet again. Once you have it will feel less headspinning. You are still you with all those things that are important to you. Endo isn’t you , it’s just a companion with a bit of an attitude.
Many of us experience endo in a huge variety of ways with varying degrees of discomfort. Often however we have learned to normalise our physical pains and aches , glitches , awkward bits when actually we shouldn’t. We’ve been well trained in the art of minimisation. It’s what lots of women do. A few with endo truly have zero symptoms. So what most of us find is the box we’ve been handed with endo means all that stuff we’ve ignored or pushed away makes sense and has a metaphorical home. Understanding what endo means for your body is useful in being able to find ways to manage the thing and what seems to set it off for you. I like to think of it as a conversation where I’ve finally learned the language. Sometimes I don’t always fully get the meaning etc but we are on our way.
I used to work with infertility as a nutritionist and acupuncturist and there’s a lot you can do and up your chances babywise, as well as manage the endo. It’s not an either or with other care on offer either. It will mean should you conceive your chances of success and a healthy pregnancy improve too. My favourite guide to endo care, understanding the condition and nutrition is Katie Edmonds book Heal Endo. It’s a real support and the backbone of her work is around fertility matters. You could do a lot worse than really studying it. She has a sister book with 4 weeks of recipes if the kitchen is a bit of a challenge or you want just to lean in. She has shed loads of research to help you understand the condition too which should go some way to you finding your feet.
Treatment wise. Check out your local experts. Make sure you get the best care. Endo UK have local groups you’ll be able to ask or FB there’s Nancy’s Nook and on here Lindle has a fb group where information and resources are plentiful. DM her for the link to that group.
hi Madanza, I know that panic feeling too well. The good thing is that they’ve found the endo and now you can have a laparoscopy to remove it, which, if you have been having fertility issues will improve your chances. Although like someone else said on here, some people conceive and have a healthy pregnancy with endometriosis. I found out I had endo in November after 4 years of miscarriages and failed ivf. I even asked one doctor twice if it could be endo and he said he didn’t think it was. Like you I didn’t have severe pain, so I didn’t think I had it either, I didn’t use pain killers and my periods are not heavy (and haven’t been for years). I got diagnosed after doing my own research and the specialist could see that my ovary was in a different position because of endo lesions. Mine was stage II-III, I had adhesions and some on my ovary. I had it removed at the beginning of December and we’re waiting until the new year to try again. Unfortunately I’m going to be 41 soon, but the endo specialist seemed confident that we are now in a better place to have a healthy pregnancy.
I know it must be worrying for you right now, but if you have been struggling with fertility, it’s actually great that they have found the endo, I’m sure it’s something that gets overlooked by fertility clinics all the time and they just keep recommending ivf, which works for some but not others depending on where it is etc, the stage etc.
I completely identify with your story, Olive8000. I've just been diagnosed at the age of 40. The surgeon proposed a full hysterectomy and I actually agreed to be added to the waiting list for surgery but I was in such a state of shock at the time of diagnosis. I don't have children but don't want that opportunity to be taken from me quite yet so am hoping to see a private consultant in the New Year. I'd be interested in finding out about more conservative surgery. I was bleeding for 3 weeks out of every 4 and was put on the pill to control this so I suspect that some sort of surgical intervention is needed. I'd love to keep in touch and know how your journey progresses. Wishing you the very best. xx
I’m so sorry for what you’re going through, it’s absolutely crazy that it can be missed for such a long time isn’t it. Definitely worth getting a second option, drs can often be wrong (in my experience anyway) and I hope the next one provides a more comfortable alternative. I’ll let you know how we get on for sure. Fingers crossed.
Hi hun I have got deep infiltrated endo just been diagnosed at age of 37 back in April hun they only do mri to know how it is effecting you and how many other organs involved you may not need a hysterectomy don’t panic too much I’m on wait list for further bowel surgery xxx
I know this has been a buig shock to you but don't give up hope of a child.I have suffered all my life with bad periods etc thought it was normal! I then finally booked an appointment with the GP (age 37) as I'd got weird pain near my, what i now know is my pouch of Douglas!
Anyway by the time my appointment had come I found out I was pregnant. 13 yrs on I'm riddled with endo etc and only just got my diagnosis. So I definitely had it prior to getting pregnant. I know each case is different but it's not the end of the journey yet.
Had endo since age 19, 48 now. 2 babies, 1 conceived through IVF at 33 and the other I fell naturally. I had acupuncture to help with the IVF which I found fantastic for calming me so maybe try some complimentary therapies?
As for hysterectomies; they don’t cure endometriosis - adenomyosis they do. A decent specialist shouldn’t advocate a hysterectomy unless there’s other factors involved. I think that you had a good surgeon to stop the operation and refer you to a specialist; that’s what they should do! (from experience though some carry on and make the endo worse by ablating when they shouldn’t!)
Look into managing your endo’ with diet, supplements and complimentary therapies while you await your operation and lots of times after operations to clear the endo people fall pregnant. Don’t give up hope! 🩷
Thank you everyone, I'm overwhelmed by all of your support. 💜 I'm just worried that the surgeon already said there was a chance he'd have to remove one of my ovaries when he was planning on removing the cyst (he just casually dropped it in the morning of the op like it was nothing!) and then he said after he found the endometriosis that both my ovaries are swolen or inflamed or something like that so I'm worried the specialist will say they need to be removed. But I still have periods every month so surely they're releasing eggs? I'm just so panicked. I've been living with painful periods since I was 12 so I don't care about the pain if it means there's a chance I can still have a baby but I'm just so worried it's killed my organs or something?!
I'm so sorry for my rambling posts. Thank you so much for all of your support, I appreciate it so much! 💜
Please don’t panic yet! I was in a similar position…. Knew I had a cyst on an ovary but it turned out I also had fibroids and lots of endometriosis (Stage 3) without much pain except for during my periods. I had a laparoscopy and cleared everything out (done by a private fertility consultant). I did have a beautiful baby girl just after this so please don’t think it’s over yet!! X
I’m in a similar situation, my husband and I have been trying for a baby for two years and had a miscarriage so we decided to do IVF, before transferring our embryo a Dr found a fibroid in my uterus so we put hold on embryo transfer. I did a MRI to see how badly the fibroid is pressing on the lining of my uterus that they found out I have Endometriosis and it’s at stage 4! It’s affected my uterus so badly that I was told I need to do a hysterectomy! From embryo transfer to hysterectomy!!!! I am devastated, sad, furious and depressed
Oh my gosh that's awful I'm so sorry 😞 Can you get a second opinion? I'm so worried this will happen with me but surely they can't force you to have a hysterectomy? Sending hugs and wishing you the best of luck xxx
If you have stage 4 endo ask your GP to be refered to a BSGE specialist endometriosis centre, don’t have a hysterectomy until you see a specialist. Hysterectomy doesn’t cure endo! In the mean time of you can go to see an acupuncturist, had a few friends (& myself) fall pregnant after a few sessions. Shitty disease but it teaches us to listen to ourselves and advocate for ourselves xx
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