Are my symptoms bad enough to justify laparoscopy risk?

[EllaFitz]

Hello, I'm new here.

Sorry I know this question has been asked many times, however am feeling very confused about my specific situation, and about whether or not to go ahead with a laparoscopy (Excision). Really struggling to make a decision after years of investigations and confusion.

I'm 28 now. I have had intermenstrual bleeding for years, frequent constipation etc. Around a year ago I have developed severe pain in my tailbone region during the time of my period (lasts around 4 days, painkillers do sometimes help). Periods are long usually lasting 8-9 days. I have always had deep pain when having sex in certain positions.

Have spoken to several gynaes and have had mixed messages about whether or not I have endo. During pelvic exams have been told that where I have pain is indicative of endo. MRI and Ultrasound did not show anything unusual except for slightly thickened uterosacral ligament.

Have the option to go ahead with a laparoscopy however have read a lot about the risk of adhesions from the operation which in itself can cause more pain. Worried about getting on a conveyor belt of operations and perhaps making things worse- especially as my symptoms aren't as bad as other women.

Should I just observe symptoms and manage the pain and only go ahead with an operation when it's too hard to manage? Or is it worth going ahead even with more "mild" symptoms in order to prevent it getting more severe down the line?

Would appreciate any advice Thank you in advance x

[Harriet_health]

Hi I don’t think there’s a right answer here, but I’m having excision surgery and my pain is not debilitating. I feel incredibly lucky that My symptoms are manageable. I do sometimes have a terrible flare up where I really struggle for a couple of days, but it’s not every month. I’d rate my pain as 2/10 most days, it’s there but I can be distracted by work.

However I want to have children and I can’t seem to get pregnant so I need to go down the surgery route to see if that can help me conceive.

Surgery is a major decision so if you feel you can manage things as they are then maybe that is the best course of action.

If 2 years ago i had been given the option to have excision surgery I would personally have taken it because at 31 I’ve spent a year trying to get pregnant and I’m being told endo is preventing me.

Best wishes to you whatever you decide to do xx

[EllaFitz in reply to Harriet_health]

Thank you so much for taking the time to reply. Interesting to hear your experience and it's definitely given me another perspective- fertility is definitely another important factor to consider. Glad to hear that your symptoms are manageable most of the time. Really hope that the surgery helps you regarding starting a family!

[Christin_a]

Hello

No one can make the decision for you. So as your worried about adhesions and have read up on that etc, I'll ask about the other side of it. So you can weight up the risk and benefits.

Yes their is a risk of adhesions. But endometriosis is a progressive condition, so if left it can spread / create more symptoms. If it spreads the more they need to do in surgery. So you need to weigh up what's right for you.

If you wait. Where do you draw the line to say you want to be referred back to gynaecology? Knowing the wait list could be months?

It's not at all unusual for endo to not show up on imaging especially ultrasounds. As depending on the placement etc or may not show, and more importantly its wholey reliant on the person interpreting the images. And unfortunately there isn't of people in the UK who are good at doing that with endo.

[EllaFitz in reply to Christin_a]

Thank you for taking the time to reply. The points you raise make a lot of sense- especially regarding the surgery being more complicated down the line potentially / the issue of getting another referral- something that is not straightforward at all... Will try to reflect Thank you again!

[Andiepand]

I think it depends on the quality of life, i am going through with the lap as i feel like i currently can't go on.

My life has went on a downward spiral fast and i hope to get some relief/answers. No one can decide for you, do what your gut tells you. I hope you feel better soon

[EllaFitz in reply to Andiepand]

Thank you. That sounds really difficult- I wish you the best too- hope you get some relief x

[Moon_maiden]

It’s a very tough decision, I went over it in my head pros and cons. Consultant thought superficial when I first saw him. I decided I wanted to know one way or the other and pain was getting constant. Turned out deep endo. Now waiting hysterectomy, also have fibroids, etc. No one really knows extent of endo at the moment, but they will remove any during op.

Never had op before this, wasn’t as scary as I thought.

Think carefully and talk to GP or consultant.

[EllaFitz in reply to Moon_maiden]

Yes it is a hard decision. Why did your consultant think it was superficial initially considering the chronic pain? Have you had any improvement in your symptoms after the operation? Glad to hear the operation wasn’t as bad as you thought x

[Moon_maiden]

I think because on exam, it was more tender lower than abdomen, at the time I’d get pain around an hour after someone poked and prodded, or doing things. I don’t know why it did. Age likely had something to do with it, I was 51 and although bad periods, managed and got on with it. Possibly thought if symptoms had got worse in recent months could have just started. MRI would have been good before lap.

I think it’s been there years, had a few visits A&E late teens/twenties. GP once said if you have a baby things will improve, never went back. In hindsight this wasn’t a good approach. 🤦‍♀️

Things didn’t improve for me after and why further op, unless it’s something else.

If you can stick with one GP, it doesn’t work seeing different drs.

I’ll know 24/25th how much endo there is (was hopefully if any 😂) and any damage.