Possible endometriosis?

[siucra]

My gorgeous DD (just 15) has been experiencing the most excruciating pain just after her period ended last week. I am so worried that this is endometriosis and we are going to a GP today.
The pain doesn't really go away and we are managing it with strong ibruprofen but she is in a bad way - and has exams all week.
I am so worried about her. If it is endometriosis, then I know we will have to manage it early but then I am also worried about the doctor fobbing us off. Does anyone have any advice?

Sorry OP, I don’t have experience of this but am following as in the same position with dd. We’ve been logging her periods (long, heavy and irregular) so we can go armed with some history.

I hope it goes well 🤞 please update us if possible.

Thank you @EdwinsActsOfKindness It's just so worrying, knowing if it is Endo, what she has in store. Will report back if the doctor is helpful. Take care xx

The only way endo can be diagnosed with absolute certainty is a laparoscopy. DD (now 20) spent a couple of years being sent for various tests, when she finally made it to a gynaecologist at 18 he said “probably endo” but DD was reluctant for surgery initially until the pain got really bad. When he operated the surgeon found moderate endo with some bad patches and removed them. GPs notoriously dismiss young women and teach them that pain is normal, sometimes it is but often it is not. I know a lot of women with endo, nobody had a quick outcome. Luckily for us we were able to go private as even with health insurance it cost a lot (we are in Aus so costs/public waiting times can’t be compared). I would try and get an appointment for your daughter with a gynaecologist if you can.

Thank you so much @TheMeaningOfLife. When did you start realising it was Endo? We live in ireland and the treatment/ awareness around it seems to be minimal. Women travel to Romania for surgery. I can look into a gynaecological appointment but should I wait?

What's her general pain threshold like? I only ask that because I have come to realise that I have a very low pain threshold and feel pain mode than other people.

As a teen my periods left me bed ridden from the pain. I started age 10 but it wasn't until I was about 13 that they became excruciating.

The GP prescribed me mefenamic and transenamic acid send it didn't touch the sides. In my case it took about 4 years but my periods settled and the pain was significantly less and much more normal. No endo in my case.

@siucra I have endo. I was diagnosed over 20 years ago and it was a battle to get to the diagnosis. However, rewinding a bit, I went on the pill at just turned 16 to control my "painful periods" and managed quite well on this until 10 years later where I had a reaction to the pill and had to come off it and was never able to take it again. That meant the symptoms came back, the horrific pain throughout my cycle and that led me onto the gynae referral route.

How do you feel about her going on the combined pill? If it is endo that is the first step to "treatment" anyway. Get her to record her pain levels every day in a diary and her general well being, ie I have chronic fatigue from the endo, no painful sex, horrific period pain, plus ovulation pain and then weird things like numb legs when I am not on my period. It helps to have a how did I feel today diary to tune you into your body.

I also think that this is one of the best charts to work out what the pain level is but also to take this along to any appointment with any health care professional so they can see what she is referencing.

https://www.mistysurimd.com/patient-info/pain-levels/

My link doesn't work weirdly, we'll try this one https://studylib.net/doc/8023015/comparative-pain-scale

Just relooked at that pain scale, I think it gives good descriptive words for the pain and when it gets into the pink zone that describes what it would feel like if you had it every day all the time pain wise. I hit a 7 or 8 about 3 times a year but I do use a TENs machine, massage gun and plug in heat pad to alleviate period pain every month anyway. It is shit, totally shit and I really hope she doesn't have it. My teenage niece thought she had endo too, fortunately it was a cyst that they are keeping an eye on. She had an MRI to see what was going on inside.

@siucra tbh not for a few years, it wasn’t mentioned by the doctors, it was when DD was working as a waitress and was chatting to her older boss that she realised all the symptoms she had were what her boss was talking about with endo. She was about to see a bowel specialist and have a colonoscopy when we changed tack and saw the gynaecologist. Her pain has totally disappeared with surgery, her only problem now is heavy periods which we think is caused by the fact she had an iud inserted at the same time as surgery as she wanted to come off hormonal birth control. The different pill (she was already on one) the gynaecologist gave her to see if that would make a difference without surgery made her actually suicidal so that had to stop. I grew up in Ireland, it doesn’t surprise me that “women’s issues” are still way down the list of priorities!

Thank you so much. Yes, I hope she doesn't have it... a cyst would be great in comparison, iykwim xx

I have been dealing with Endometriosis since my very first period at the age of 9. I am now 24. I was diagnosed with PCOS and Endometriosis in 2020. I underwent surgery as treatment for it in 2022. Please be aware if she does have endometriosis there is no cure for it. Only managing the pain. Surgery is only a form of treatment. Some women undergo the surgery and are lucky to be pain free for some period of time or forever. Hysterectomy doesn't solve this either. They will recommend she uses contraceptive methods to manage her pain most likely the pill. The BIGGEST tip I have for you with having experience with all of these doctors I have dealt with is the following. NEVER ask them for what you want. Tell them. Be firm. Tell them you want her to be given a referral to a gynaecologist for a transvaginal scan and ultrasound. She may have Endometriosis or PCOS or both , even Adenomyosis. I bought a period cramping massage machine on Amazon (less than £30 pounds wear it like a belt) it's a great alternative to lugging around a hot water bottle provided vibrating massage and heat at 3 different levels. Also, have her intake fresh fruit smoothies / juices with anti-inflammatory properties. I bought a juicing machine from Argos around £40/£50). Our flare ups and pain is caused by inflammation of the area so it's best to help from within. I am on repeat prescription of Co-codamol 15mg/500mg. It's not something they will just give as it's strong pain relief, it's something you just need to tell them you want. Simply by stating the symptoms and daily crippling pain has created a low quality of life hence the need for it. They will always recommend tranxemic acid tablets, paracetamol, naproxen , contraption methods etc none of this worked for me. As her mum I do recommend you keep track of absolutely everything. Every appointment phone call or visit ( date, times, context, who you spoke to etc) as even if she is correctly diagnosed prior to that if she has been misdiagnosed, given medication for misdiagnosis, delayed treatment after diagnosis which meant symptoms worsened etc you will have a strong case of medical negligence if you wanted to take it that far, with women's health we are overlooked and not taken seriously. I'm having trouble conceiving because it went untreated for so long. I'm currently waiting to hear back for my referral to the fertility clinic. She should take probiotics , iron tablets etc. I'm also suffering from incontinence due to the cysts have spread to my bladder and I have to wear nappies now. For her heavy periods , if like me where I would still leak through the Super Plus tampons and pads even wearing them both at the same time (maternity ones, overnight pads etc) I would suggest her wearing the Always Discreet Pants. It doesn't have the thick , hanging bulge regular nappies do and holds amazing for me. The outline just looks like you're wearing panties so no one would know. My process is still ongoing but happy to answer any questions you have! I've been up for over 24's from my pain being so severe, so experiencing brain fog and unsure what everyone has or hasn't said and what your original post stated but I hope I have been helpful! (Also if she's experiencing recurring Thrush or BV as a result of all this going on I suggest purchasing the following probiotic from Amazon - Physis Oral Probiotics for Women (the Trio one) it's a gem. Following the instructions didn't work for me so I'd take 2 in the morning and 2 at night.

I have reviewed the previous comments and can see you're based in Ireland. I am not sure how it all works, but I'd recommend coming to London for this if you are still unsuccessful over there. UCLH has a specialist department one of the very few in the UK that deal with this in the gynaecology department. They diagnosed me through my transvaginal scan and ultrasound and then I had surgery for treatment. Some women do have endometriosis even severely but doesn't come up in the scans so have to opt through surgery to receive diagnosis and then they proceed with the treatment in the same surgery. I've got Stage 4 Endometriosis and I firmly believe it only developed that bad due to my concerns being ignored. I had never heard of either of these chronic illnesses until I was diagnosed so she's lucky she is informed and has some sort of direction to go towards. I hope she has a much better journey with getting help than I did. Through my multiple experiences I learned how to speak to these doctors to be heard and it's simply just telling them what you want, even when they disagree with you. Please bare in mind Endometriosis is inherited it can either be paternal or maternal so if anyone else in the family experiences anything that matches up with PCOS, Endometriosis etc it's like they do have it too. Also if a grandmother, mother, sisters have Endometriosis you are 7 times more likely to have it too.