Feeling forced into surgery? No other option - Endometriosis UK

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Feeling forced into surgery? No other option

goldenretriever14 profile image
goldenretriever14

Hi everyone, I'm new on here and was looking for some advice. I'm 22 and have been having the most horrendous painful periods (and pain when not bleeding, pain when going to the toilet and now pain during sex) for about 2 years now. The doctors think I might have endometriosis. I have the mirena coil fitted in november to try and help which has just led to me basically constantly bleeding for the last 6 months. My doctor told me to wait another month (to 7 months post fitting) to see if it works, my most recent ultrasound also showed an ovarian cyst. She now wants to send me for a referral for a laproscopy but I'm really apprehensive about it. Because I'm only young, I don't want to have to keep having surgery for the rest of my life but equally want to try and preserve my fertility for when I want to start having children. Just feel like I'm being pushed down the surgery route with no other option or choice, and I'm not sure if that's what I want.

Does anyone have any advice or been through the same kind of thing?

Just feeling down and like this is so relentless and ongoing! Just want it solved :(.

14 Replies

Hey, I’m also 22 and have the most horrendous pain that’s slowly got worse and worse. I’m booked in for my first laparoscopy next Friday. The only way to diagnose endo is through laparoscopy so you would need to have the laparoscopy to get a definite diagnosis and it’ll help you to understand the stage/severity of it. Me and my partner have already struggled to concieve so I’m hoping this surgery will help me to concieve (I also have a cyst in my ovary that will be removed) There’s no guarantee that endo will affect your fertility but I would keep it in mine. I was always told that because I’m so young we’d fall pregnant easily but we haven’t. I know it’s so scary to need surgery at such a young age but for me personally I think the benefits are worth it, to have more of an understanding of what’s going on inside my body and what the next steps will be. Xxx

Hey, Thank you so much for this. It's nice to know I'm not alone, I'm sorry you're having the same problems though - it's so rubbish. Thank you, I think I've been quite negative about the surgery but I guess it would be better to know what is going on so that I can see what and how to deal with it best.

Best of luck for your laparoscopy!

Thank you

🥰xx

Hello its really important to remember it's your body you have a choice.I would recommend seeing a gynaecologist (ensure by checking the hospital website) that they have a minimum of a specialist in endometriosis. As they will be able to give you more knowledge than your gp.

As for surgery. There's pros and cons to it like any treatment for anything. So you need to look into both and decide what is right for you. Examples of pros and cons

Pro

If you agree to have the endo removed in the surgery (if it's confirmed as being there) you could have a big decrease of symptoms

Progressive condition so surgery now vs one in 10 years could be more minor

Cons

It is surgery and every surgery carries risk

What if it doesn't help

Possibly needing multiple surgeries

It is important to reject when looking through these forums and things those that no longer have symptoms are less active on these forums than those who have symptoms. Because they feel they no longer need the support system. So I know it can feel one sided when looking at the forums.

It is your choice you don't have to try anything you don't want too they can't say you must try x before trying y. If you don't want x tell them.

Thank you so much for this. It helps seeing both sides. xxx

Hey. I was against surgery too. I know research shows recurrent surgeries on the ovaries can worsen fertility and also for loads of people the endometriosis comes back. I’m only 24 and I was 23 when I was diagnosed with everything. And I have adenomyosis and an endometrioma. They wanted to remove my cyst but I asked them to measure it and see if it was growing and thank God it wasn’t and it was less than 3cm. To control my periods and pain I take norithesterone every day normally 5mg. I now am pain free and period free. I can actually live a normal life. My symptoms were constant bleeding for over 50 days and severe pain and nausea and vomiting during my period. I don’t know if what I did would work for you. But ask for other medical options and look at the size of the cyst if it’s small and if you get on top of your pain with medication then ask them to monitor the cyst instead, because there is always the risk of it rupturing.

Also to add the norethestirone was not prescribed/ recommended by my gynaecologist. It just worked for me and I continued taking it. So this was basically how I decided to manage myself.

Oh gosh, that's such bad luck - I'm so sorry! Although it is reassuring to hear that you are now pain free. That's the aim at the end of the day. Thank you so much for sharing your experience x

How many days you take norithesterone back to back?.

Hey I normally take it every day for about eight weeks and then take two days off to have breakthrough bleeds and then go straight back on. This also allows the norithesterone to work at its max again when I have a break. And normally around this time I start spotting. But just a reminder that no doctor told me to do this. It just works for me as no birth control has been effective for me. And I didn’t want surgery.

Thanks for reply. You should take ultrasound scan every 6 months ones. When you have spotting at that time you feel any abdominal pain, leg pain and back pain?.

Hey so i had an MRI that initially diagnosed everything and then an ultrasound to monitor the endometrioma growth. If it had got substantially bigger since my MRI 5 months prior then my gynaecologist wanted to operate. If my symptoms change or at least once a year I’ll ask for an US to check everything as they definitely won’t to do an MRIs due to cost.

I had surgery at 23 and was told if I had surgery 2 years before I’d have been able to preserve my fertility. I am now 27 and have struggled with my infertility since. Only thing I can say is my lap surgery changed my life. I haven’t had any major pain since, and I really struggled everyday with period and non period pain.

Gilena profile image
Gilena in reply to Duckyfeet

This gives me hope for a better quality of life and less pain after my upcoming surgery! Do you mind sharing what stage endo you had? I have stage 4 endometriosis with a large rectosigmoid nodule, completely obliterated pouch of douglas, bilateral endometriomas and adenomyosis. I hope that you will find some answers and hope during this infertility journey❤️

Thank you for sharing this! That's massively helped me - thank you so much! I'm so sorry you've had so many problems but I am pleased to hear you haven't had major pain since! xx

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