So I’ve had a few varying symptoms over the past few years: hip pain (particularly during sleep), pain during sex, long periods, and now stabbing pains right at the start of every period - to the point I ended up sleeping on the sofa once to not disturb my partner! I’m also on the progesterone only pill which when I was on it before I had no periods at all, but now they’re back with a vengeance!
I had an ultrasound a couple of months ago (both external and internal) but all they found was a small cyst. But they did suggest I could have a laparoscopy to check for Endo.
The pain is now getting worse, so I’m thinking of getting back in touch with my drs to arrange the laparoscopy, but I’m kinda worried about it. Partly the surgery itself and healing, the results, but also if I had one and it wasn’t I’d feel like I’d wasted their time and also still wouldn’t have got to the bottom of the cause of my problems!
I guess I’m not really sure what my question is (sorry!) just looking for advice or if anyones had a similar experience. Anything to ease my mind would be appreciated! Thank you
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Jusm689
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I am 1 week the other side of a laparoscopy. 38 years old and had my pain dismissed by docs as IBS for 22 years. I also asked numerous nurses and docs about my fertility over the course of this time for various reasons, including the fact that my mother had issues conceiving me.
It's been an emotional roller coaster that's for sure. I finally feel vindicated (but also very angry and resentful of GPs). I was also terrified beforehand but the staff in the hospital were incredible with me. I was terrified of the general anaesthetic due to past trauma - everyone will say things like "It's OK, you'll be unconscious!" but for me that was the whole issue. The anaesthetists couldn't have been kinder.
As for the physical recovery, I had a lot of drugs inc codeine so the pain was manageable. They fill you with gas to have a look around and afterwards you'll likely have pain in the tips of your shoulders due to the pressure on your diaphragm. No painkillers will touch this but it's thankfully very short lived!
I went in as a day case and was able to go home later that evening. No heavy lifting for a week or so. A week out and I'm now only taking occasional paracetamol.
One thing I'd mention is that the codeine does bung up your digestive system so you'll likely be prescribed lactulose laxative. Be warned, it will give you the most foul smelling gas but it will get things moving eventually! I really wasn't prepared for the week old chicken fillet in a bin, in summer type sulphurous smell...
As for the results, I found out I have endometriosis! That was reassuring. I am not crazy, or a hypochondriac! Some nodules were excised from behind my bowel, uterus (pouch of Douglas) and superficial peritoneal lesions ablated. I also have a bulky left ovary - PCOS. All of these findings correspond with where I was feeling pain. Time will tell as to whether removing the nodules will help with my pain.
I can't tell you what to do, but all I'll say is I wish I'd pushed for this sooner. My outcomes re fertility might have been very different. I think I'm still looking at IVF or nothing as I'm now 38. And whether you want children or not, getting your pain addressed can only increase your quality of life, right?
Hi Kat234, do you mind me asking if your laparoscopy was performed by your gynaecologist or a specialist endo team including bowel surgeon? I ask as I'm due to have my first laparoscopy in 2 weeks time with gynaecologist but now wondering if I need referred to specialist endo team as symptoms point towards endo on bowel.Thanks x
Glad to hear you're being seen in the next 2 weeks! Have you had a consultantation with the surgeon yet, is that on the cards? Usually you have to sign a consent form for surgery and they talk you through the op procedure and what they can/can't do at that time.
In my pre-op consult I was told they can only treat mild/moderate endo and that anything more serious inc fusion of organs or deep penetrative lesions on other organs would require a second go with an interdisciplinary team. Basically the laparoscopy is the initial see what's what op. And if it's complicated you'll need to go back. My surgeon treated endo 'behind' my bowel. I have yet to see him for a follow up but the post op letter he sent says I had endo excised from the structures that hold my cervix in place (attached to sacral spine) and the pouch of Douglas. I think these are quite common areas to find endo and they can irritate bowls. Peritoneal nodules can also irritate bowels without being attached - so it might be as straight forward as that if you've got bowel symptoms.
The thing is, they don't really know until they get inside and have a look unfortunately. So, I'll keep my fingers crossed it's smooth sailing and you don't need a second round.
Thanks for explaining. I guess I'm freaking out a bit as it's happening sooner than expected and I'm worrying about having to go through a lap with my gynae who is not a specialist to either find no endo or complicated endo that she's unable to treat...to then potentially have to go through a second op with a specialist team.My pre assessment is next week so I'll be sure to ask lots of questions, thanks for the advice.
I'm glad you finally got the vindication you needed after years of suffering. Hope you are recovering well from your op and the treatment relieves your symptoms. Take care xx
Freaking out is completely Do you have access to a counsellor? I found talking to someone neutral about all my fears really helped.
Re the gynaecologist doing the surgery - they are specialists in endometriosis. We have to trust them to do the right thing and they are very experienced in what they do. The unfortunate thing about endo is that there are no tests for it and the only way to be sure is to have a look. Unfortunately we just have to trust the process. I wish it was easier 😪
Got my fingers crossed for you that it's straight forward and you have a great outcome. Take care Xx
Thanks so much for this, super helpful! At least my drs have acknowledged it’s a possibility it’s endometriosis and would be willing to refer. It’s probably better I get it checked sooner rather than later then, I’ll get back in touch with my drs. Thanks again ☺️
I am sorry to hear what you are going through. I had surgery to remove endo and tubes. However after my ultrasound they did an MRI scan to check and confirm I had endo before doing surgery. I don’t know if this has already been discussed between you and your doctor. Otherwise it may be worth it 😊 wishing you all best of luck. 🍀 Kr
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