First Post – Is surgery the answer? Advice needed please!

This is my first post on here, so I apologise now if it’s a little long. I don’t really have anyone to talk to properly about all of this, so this is probably going to be a bit of a story – thank you so much in advance for taking the time to read this!

I have suspected endometriosis but have not been diagnosed – I’ve been offered laparoscopic surgery to diagnose and treat any endo. I’ve given myself some time to think about this, and have done a lot of reading on endo as well as people’s experiences on here and other forums. What I’ve noticed is a LOT of people saying surgery has not improved things, and/or has made their symptoms worse. I know surgery itself can cause further adhesions to form, and this is my concern. So I’m hoping I can get some of your views on this, and what your thoughts are on my situation.

The background is: I’m 23 years old, have experienced certain symptoms for a few years now. Unlike most people I read about, I don’t currently or have every really had typical period pain. What I do get (and sorry in advance if TMI!) is severe pain during my period when having a bowel movement. I’m talking intense lower pelvic cramping and pain like I’m being stabbed up the bum (sorry, only way I can describe it!) when on my period, most intensely in the first two or three days, I get this before and during any bowel movement, if I have any gas or even when I need to urinate – the pain only goes once I relieve myself. I don’t have IBS, BMs are normal (although frequency is at least doubled when I’m on!) it’s just the pain. All I can do is stop and brace myself and remember to breath. Pain meds don’t really help as the pain comes on so suddenly and intensely, but is over in about 10-15 minutes so doesn’t even have time to kick in. I get this with every single period, and on occasion I’ve noticed it at other times in the month, but never as intense (until today coincidentally which was really bad, not sure why!).

This is my main problem, I remember having this for years but I’d always just assumed it was normal for some reason – I think because it’s gradually gotten worse over the years, particularly when I came off my pill at the beginning of the year. I also can get pain on occasion during intercourse (deep penetration pain), not all the time but not sure what the pattern is – unfortunately I worry about it hurting which in turn makes the act hurt! More recently over the last 6 months I’ve been having right sided aching throughout most of the month on my right side, in the area between my hip and thigh. It’s mild but can be uncomfortable and I can pretty much always feel it there, and sometimes get pinches of pain there too.

It was only after a particularly severe period episode earlier in the year when I had a moment of sudden realisation that this pain was not normal. And then I felt very stupid for not realising this sooner. I went to the GP about my symptoms. The GP suggested on my first visit it could be endometriosis or ovarian cyst, and referred me for an ultrasound. As I am fortunate enough to have private healthcare through work, I went to see a private endo and fertility specialist for a consultation and internal ultrasound. He seemed pretty sure I had severe endo, and in the TV ultrasound (which was quite painful!) said he felt like my right ovary was completely stuck (hence the aches I get there). He suspected I had deep infiltrating bowel endo so ordered an MRI. One MRI scan later and nothing showed up – no DIE (thank god) and no ‘tethering between uterus and bowel’. No mention of anything wrong with my right ovary. So now he thinks it must be just superficial. He’s now basically left it with me to decide if I want him to perform the lap to diagnose and remove anything, or if I want to go back on the pill (which I know from experience doesn’t remove the symptoms).

I’ve given myself some time to decide what to do - the problem is, this doesn’t really have a big impact on my quality of life most of the time, it’s just doing my period. So far it hasn’t stopped me going to work (although thankfully through sheer luck I’ve come on over weekends the past few months so have been at home). I just know it’s not normal and there is something wrong with my body. I’m worried it will get worse. I’m worried about the fertility issues endo can cause if I don’t do anything. I’m also worried it’s not endo – it really seems to be from what I’ve read and the doctor’s opinion, even though I don’t have the other main endo symptoms. The docs seem to have just said endo from the outset and never considered anything else (although I don’t even know what else it could be!). Finally, I’m worried surgery will make things worse – I know endo sufferers experience symptoms a lot worse than I have, but could having surgery cause more symptoms?

I’m really sorry for the long post and the rant, just needed to get my thoughts out! Any views or advice would be really appreciated. Thanks everyone xx

8 Replies

  • Hi you need to have the lap for your own peace of mind. You need to know what is going on so you then deal with it. Sometimes it's harder not knowing what's wrong. You say he's an endo specialist but is he registered with the BSGE?

  • Well on the the hospital website it says he specialises in endo and laparoscopic surgery but I can't see that he is registered with the BSGE. But does he need to be, as he does not think it's severe? I know you're right, it's hard not knowing, but surgery just seems like such a big step...

  • Hi it is a big step and only you can decide. I spent 30 years not knowing what was wrong with me , but always knew that something wrong inside. Because things had been left for so long everything was stuck together, I had an endometrioma and two hemoragic cysts on ovaries as well as blocked tubes. This disease had made me infertil. If I had pushed harder to get answers this could have been prevented.

    If you do have endo it's better to get it sorted sooner rather than later.

    With re to surgeon. He may well specialise in endo , but if it does turn out to be severe then you would need to get a referral to a BSGE centre. This is NHS guidelines.

    Good luck with whatever you decide.

  • I was recently diagnosed and treated for endometriosis. I only had issues with bladder and bowel for a few days a month. I never thought anything of it. It was discovered by chance as the lesion is effecting the ureter. So I have to have a major operation otherwise I would loose my left kidney. I wasn't too keen on having my operation as I didn't perceive I have any health issues. However, 6 weeks post operation, I feel better than ever did. I would say there is a 10-15% increase in health level. I wish I knew this condition and was treated earlier not at the old age of 40!

    So there is success stories out there. On the internet you tend to have more negative stories. Everyone is different you need weight up pros and cons for this yourself. BSGE centre is recommended for treating endometriosis. You can check out lindle posts here to find out more.

  • In my opinion it's better to know I was diagnosed early age 16 and in my case it's better to try and get on top of the disease all consultants are shocked with how severe my symptoms are even now when they go in can't believe how superficial it is but goes to show your symptoms don't determine what stage your at with the disease , like you I thought it was the norm until I collapsed when I was 16 with pain , there is no cure with endo it's just about managing your symptoms and sometimes it's better to know what it is and staging and treatment for you more than anyone but it is has to be your decision you can ask all the questions pros cons etc only you can make the decision good luck with what ever you decide

  • Hi. If you're worried about surgery you could just ask the surgeon to have a look during the lap. They could see what's what and you could go from there and descide about treatment when you understand what the problem is. The most important thing is that you're comfortable with your treatment. Knowledge is power! Take your time and do what's right for you. Good luck xx

  • Well I guess it's personal and down to how livable your symptoms are and concerns about them worsening. I've gone through a similar dilemma myself and initially wanted to avoid surgery as it's not a cure and all surgery carries risk. But recently after getting a second specialist opinion i changed my mind based on the "balance of risk" argument and disruption to my life. Though in general like you symptoms aren't all that crazy compared to some. Having confidence in your surgeon being BSGE and good helped swing it, a lot of people who've had recurrence seem to have been treated by general gynae's rather that specialists with more rudimentary methods. perhaps a 2nd opinion might help you weigh things up too, everyone is different and unique. Good luck in working it through. X

  • Thank you all so much for your responses. It's helpful hearing other people's experiences and I appreciate the advice. I think I will look for a second opinion, as I do have a BSGE centre near me and I don't think I can just live with this not knowing. Thanks for all the luck! xx

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