I've had period pain since I was 15 and each year the pain only gets worse. When I became 18, the pain became crippling. The pain will start mildly a week or two before I start my period. Then when I start my period the pain intensifies. I find it hard to walk, I feel like I have a fever then have an episode of constipation or diarrhea. Then once I sweat myself cold, I'm exhausted and fall asleep for a few hours. Then the pain becomes lighter.I brought this to the attention on my GP and have been given Naproxen and Co-codamol for pain relief. I saw a specialist and have been to also take tranexamic acid to reduce bleeding.
I had an ultrasound to check for endometriosis and no signs were found. I know the gold standard to check for endometriosis is a laparoscopy.
Should I go ahead with surgery for a diagnosis? If I choose not to have surgery and I do have endometriosis, am I at risk to any harm? I know some of you have waited several years for a diagnosis, how did being diagnosed help you? Looking back what would you have change?
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Tigerlily34
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Hi, if left undetected or untreated endo can cause all sorts of damage, including infertility. It can stick your uterus to your bowels, your bladder, your ovaries, you can develop huge cysts. Some women need bowel surgery and end up with a stoma. At your age I think it is important you have a diagnosis, as if you do have endo you have many many years ahead for it to spread and cause adhesions.
Hello ❤️ So sorry you’re having to go through all this. I had surgery about a year ago and I would say it’s 100% worth it. Recovery took about 6 weeks (not the 2 weeks they said it would!) but since then my pain has reduced massively. I did have a sort of diagnosis before the surgery as they spotted it on an MRI, but I would say it’s definitely worth the risks of surgery to potentially gain so much of your life back. I’m incredibly grateful every day ☺️
Getting the official diagnosis also felt like such a massive weight had been lifted off me. I had a reason for how I’d been feeling and that in itself just gave me so much clairty. Hope that helps!
Hello OP,Sorry to hear about your pain and how long it has been.
I can only speak for myself that I had several MRIs that did not pick up and only the lap did. This is quite lengthy but I am a massive advocate for diagnosis and treatment of endometriosis where possible and necessary for the following reasons:
I pushed for the lap after finding out not only was I in agony but I also couldn't concieve. My periods had always been bad since I was a teen and by my 30s they were unbearable. I have had mini laps done which minimised pain but it took a full and extensive one to remove it all under a different gyno specialist.
By the time I met this specialist it had spread and my ovaries and tubes where stuck to my back walls, my pelvic area was full of scar tissue and sticking and worse the endo nodes and scars had invaded my bowel. This meant not only was it inflamed but also perforated the outside wall and started to twist the gut on itself which, if untreated, would twist until it blocked.
Now post surgery after 8 years, 2 miscarriages and 3 failed IVFs literally two months after ending the HRT therapy from the surgery I fell pregnant and I have just had a beautiful baby girl and more than this I have had 2 periods where I didn't cry on the floor, have to get carried to bed or be off work as I could not stand.
It is dramatic (and long) but it has made such a change to my life and I appreciate not everyone is so lucky in their results nor is endo the only reason for some people's pain, but for me the surgey has literally given me a quality of life so selfishly I will always advise people to go for it if they can and if there is even a chance of them having endo. The surgery to diagnose was so quick and easy and recovery so short that I don't regret it at all. The full surgery with a bowel resection was more complicated but, like I said, it has made me actually have a life.
The only change I would have made is pushing for it sooner and before I wasted thousands on IVF and changed my working hours and mental health wise I feel like I wasted years.
I’d definitely recommend getting the Laparoscopy. Mine went undetected for years during which time I had 3 ectopic pregnancies (which they now realise were caused by the endo) which were extremely distressing and in the case of the last one life threatening. I ended up with my bladder, bowel, diaphragm and liver all bound up and glued together with scar tissue. I also had a 14cm endometrioma attached to my ovary and had to have a years worth of surgeries with an endo specialist to sort it all out. It had been picked up during a previous surgery when I had my last ectopic pregnancy and they saw the endo but afterwards they sent me for an ultrasound scan which didn’t setect it so they left it discharged me and sent me away for another 5 years till I became incredibly ill. That (different hospital) told me that that had been a ridiculous thing to do because an ultrasound will only show an endometrioma and not endometriosis, so I should never have been sent for the scan in the knowledge that the endo had already been seen. . Had the hospital taken the correct steps after they saw it during the surgery it would t have got so bad after the subsequent years and I wouldn’t have been so ill. My bladder has never recovered properly from the damage although everything else did but I now have to have urethral dilations every couple of years so that I can pee. If they’re taking you seriously and offering a laparoscopy then I’d grab it. So many doctors/hospitals ignore us and that’s why many of us have been undiagnosed for many years and become very ill. If they’re only doing an investigatory lap and clean up if they find anything, then I promise that’s nothing in comparison to the severity pain and inconvenience of having to have major surgery if it turned out to be severe and left untreated. It’s worth asking for an endometriosis specialist at a specialist endo centre to do it. I don’t know if it’s still the case but hospitals were being asked to automatically refer us to them. Good luck and really don’t be scared of a lap. It’s not pleasant obviously but absolutely manageable and far better than potentially becoming ill.
Hi Tigerlily34, reading your story, your symptoms sound a lot like mine! The cold sweating was a symptom that both GPs and gynaes couldn't understand, which was the most frustrating.
I'm always wary of pain relief prescriptions. I highly recommend supplementing with magnesium malate - in the days before and during your period.
With regards to ultrasounds, diagnosis and laparoscopies -
Only a very small minority of endometriosis specialists can detect endometriosis on ultrasounds. It's more evident in MRIs, but again, not all (including some so-called "endo gynaecologist") doctors can detect it.
However, most endo gynaecologists would want you to undergo an MRI before any kind of surgery so that they're able to know all they can beforehand.
Your symptoms really resonate with an endometriosis diagnosis. For most (if not all), it's a sense of relief to have the diagnosis. You're no longer gaslighted by doctors (at least less so) and you can be referred to endo specialists more readily.
Laparoscopy tends to be the main way to diagnose. As Mollymm says, you can have a diagnostic (investigative) laparoscopy. However, if you're only wanting to have surgery for the sake of alleviating and treating your symptoms, you will want an endometriosis specialist and a bowel specialist undertaking the surgery. Otherwise, as in many cases, all you'll get is a diagnosis and fobbed off with hormonal treatment (combined contraceptive pill / mini pill / mirena coil / etc).
As much as I advocate for surgery, it's only in your best interests if you're in the right hands. So do your research first and make sure your gynaecologist is qualified
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