Possible endometriosis and scared!

[emilyrose18]

hi everyone. I am 18 and have been struggling with pain for a while now. I have seen a specialist today who has said that they are pretty certain that I have endometriosis but can’t confirm it without surgery (which they don’t like to do on someone my age.). I’m very very scared and would really appreciate ANY advice on how to handle this and tips on reducing the pain and staying as healthy as possible. Thank you in advance for any help

[Laurajayne1234]

Hey hun

I totally understand you’re pain No need to worry though I've been the same since age 14 I’m 27 now and I’ve only just been able to get booked in with the gynaecologist It does sound scary but just think it’s one step closer to you feeling abit better I’ve been told they think I have endometriosis to what sort of symptoms do you have maybe we can discuss our symptoms

Laura xxx

[emilyrose18 in reply to Laurajayne1234]

Hiya! I have stomach and back pain. I really struggle eating because I feel sick all the time and I cannot even use tampons because of discomfort .. down there... I have been struggling for a few years now but finally have some answers! - Emily :)x

[yoshiyoshi]

Hi there,Firstly, I'm really sorry to hear about your painful experiences up to now - it's never easy and absolutely horrible for anyone to go through. I'm really glad to hear that you have a doctor that's at least aware of endometriosis though. I started suffering with endometriosis at around 15-16, and by the time I was 17 I couldn't sit upright unsupported let alone walk because of the pain, dizziness, blood loss and a handful of other symptoms. I was admitted into hospital and, unfortunately, landed under the care of a consultant who not only never thought about the possibility of endometriosis, but who also performed laparoscopy surgery on me, saw the inflammation, endometriosis and cysts I had and simply called them "blemishes and common harmless things often found in women" and blaming my inflammation on my IBS before telling me to go home and to quote "get over yourself". Eight long months later, after a whole chain of doctors, I ended up seeing a gynaecologist who told me that I had endometriosis. Yes, finding out what endometriosis is scared me a lot too at first, but that doctor knowing so much about endometriosis also meant that that doctor was incredibly well-equipped to help me and support me through my own endometriosis. There are a number of different treatment options available with different ones working for different people, and I'm sure your doctor will want to work with you and support you to find what works best for you. I can't promise that it'll be easy and some days are most definitely worse than others, but never forget that you're not alone in this, and that it's okay to feel like it's a lot, because it really is a lot! The first step for me was to realise that yes endometriosis is a very serious chronic health condition (never let yourself or anyone tell you any different), but that it doesn't have to be scary. Getting to know what endometriosis is and what your own endometriosis is like can be daunting, but it can also be really empowering. Exploring that with your loved ones and health care providers is key to that.

Regarding getting laparoscopy surgery to check for your endometriosis, they don't usually hold off on that at 18 unless there are other factors (maybe because of the pandemic?), but if your doctors are happy to do a diagnosis from your symptoms alone and that's enough for them to start exploring treatment for endometriosis with you, then I'd say that's even better! Surgery's always a big risk and never a nice experience, so for some people it can feel a real pain to be told that they have to have surgery to confirm that they have endometriosis which was suspected the whole time anyway.

Regarding reducing the pain, lots of different things work for different people. Home remedies can include using hot water bottles, drinking ginger tea (ginger is one of many natural anti-inflammatories), using other herbal remedies, going for a walk (if you're able) and many other things. There are many many recommendations online (it may also interest you to know that apparently some foods are known for making endometriosis flare-ups worse than others). The use of any kind of painkillers however would definitely have to go through your doctors first as it depends on so many other health factors (you could always call your GP for a phone call appointment as they will have all your health records).

As for generally staying healthy, a well-balanced diet (nothing extreme) is definitely key along with finding a form of exercising that's within whatever limitations you're experiencing. But most of all, what helped keep me healthy through it all in the early stages was definitely by having someone to talk with regularly about everything that was happening as well as to have fun conversations with. Having a hobby as well also helps.

Sorry for the lengthy reply, but I really hope this helps!

[emilyrose18 in reply to yoshiyoshi]

Thank you so much for the response! I struggled a lot with getting taken seriously, as I suffer with anxiety the doctors often blamed my pain on being anxious! I googled a lot and found someone at the hospital who specialises in women's health and contacted her directly to set up an appointment. Took a few years of pain but I finally have some answers - even if it's not the answers I wanted. Thank you for all your advice, I literally wrote this post on the way home from the hospital and it's been so helpful reading about other peoples experiences and your tips on managing pain. 💚

[JoBTW74]

Hi Emily Great that you are being taken seriously, i feel having a lap would be good and having your endometriosis removed. You could then start using the pill to help try and keep it at bay. I don’t know your thoughts about having a family but assuming you do want children at some stage, you would have a better chance less complications if your endometriosis has not increased.

I know there is lots to think about and I agree having an operation is not nice if you don’t have to.

I personally have found a lot of relief for using a double dose of the pill, but i am a lot older than you and won’t be having anymore children.

Worth asking your gynaecologist there option. I hope you get some relief and support which ever path you take x

[emilyrose18 in reply to JoBTW74]

Thank you for replying! The gynaecologist told me that she doesn't want to do the laparoscopy on me because of my age but I have heard about others who have had it an my age so i'm confused! :/ I have been advised to keep taking my pill and hope for the best. Thank you for your advice, it is really helpful!

[GoldenGirl2002]

Hi! I’m also 18 and I got diagnosed last year with Endo, I know how scary it can feel. Don’t worry though, I tried to see it as a positive that I’d been suffering all these symptoms and at least I knew why! What type of symptoms do you suffer with is pain the main issue? I started by trying the different types of pill but they didn’t work for me so I ended up having excision surgery and a coil fitted, there’s lots of options. If you want any help or someone to talk to feel free to private message me, I know how overwhelming it can feel so young xx

[emilyrose18 in reply to GoldenGirl2002]

Thank you so much! It is very overwhelming at the moment! Did you have the laparoscopy at 18 to confirm the diagnosis because my gyno says she won't do it on someone my age? My main symptoms are stomach/back pain and feeling sick a lot. (a bit more personal - I also have been prescribed dilators to allow for a normal sex life in the future)

[GoldenGirl2002 in reply to emilyrose18]

I had my laparoscopy when I was 17, there shouldn’t be an age limit for having the surgery, if anything it’s better to do it early as Endo can progress and get worse if left so I’d try and push for a laparoscopy! I have the same, I’ve had bad pain, heavy bleeding and sickness, I haven’t been given dilators but I struggle with even inserting a tampon! Xx

[emilyrose18 in reply to GoldenGirl2002]

GoldenGirl2002 Wow, very weird that they are refusing to give me a laparoscopy then. I thought it was about my age? Strange! Can I ask if they did an ultrasound first? I am the same with the tampons too, they are so painful! I was in a lot of pain during my physical exam when I first visited the gyno so she recommended the dilators. I think you can get them on Amazon. Is the laparoscopy super painful? I know I should probably have one but it's very scary.

[GoldenGirl2002 in reply to emilyrose18]

I’d had an ultrasound before mine but it didn’t show the endometriosis, from what I’ve heard it takes a really experienced scanner to see it and sometimes it isn’t visible at all. Oh wow I might have to try them, physical exams are so painful for me, have you found they help? I know how scary the laparoscopy seems I was the same but I just tried to think that it’d be worth it in the future. I’ve had 2, the first one was just to diagnose and it was painful afterwards but not agony, if you get peppermint tablets to help with gas pain (they have to put gas in your stomach to inflate it so they can see) and take a few days just to rest in bed it’s okay, the day it’s done you will be sore but you can go home on the same day. My second surgery was to remove a lot of Endo and I had the excision which is where they cut it out, it’s a bigger procedure but burning it is much more likely for it to grow back. After that one I was in quite a bit of pain but I had lots of endometriosis and it was on sensitive places like my bladder, ovaries and behind my vagina. It isn’t nice to go through but I’d definitely say it was worth it and I’m really glad I had it done, I’d definitely discuss why they weren’t keen to operate on you and do a bit of research into endometriosis so you know what you want to get across. Look into Endo specialists in your area and ask to be referred there (you have a right to do this) as my first gynae was really dismissive but when I saw a specialist it was totally different. Sorry for the long post! Xx

[emilyrose18 in reply to GoldenGirl2002]

Thank for the detailed reply! I am trying to learn as much as possible and it’s really helpful. The dilators are still very new for me so not sure how much they will help but I have heard that they work well for lots of other people so defo worth a try! I had my ultrasound on Friday and they didn’t see anything either! I will definitely do some more research and see if I can find an endo specialist in my area because I think that would help a lot.

[GoldenGirl2002 in reply to emilyrose18]

Good luck! Feel free to private message me if you’ve got any more questions or anything xx

[emilyrose18 in reply to GoldenGirl2002]

Thank you so much !!!! Talking with you has really helped