Help - does this sound like endometriosis? Should I get it checked? Under 20 yrs old, completely unsure.

[epitola]

(Edit: first of all the support and kindness I have received on this is just overwhelming and I am so so grateful and appreciative for all the advice and positivity. Thank you. You are some of the bravest, strongest and most supportive women I have ever had the fortune to come across. Also lots of comments are referring to self diagnosis I talk about at the end - I would just like to say that until I am not self diagnosing. I am not saying here that I have endometriosis, and I will not think I have it until I have a diagnosis from a medical professional - I've never actually looked very deeply into symptoms or compared them to experiences I've had until recently because I didn't want to seem as though, or accidentally do, exactly that. I am explaining some of my experiences that make me think there's a possibility that I could have endometriosis, but in no way am I saying that these are examples endometriosis - if anyone who is trying to understand endometriosis finds this post please do not take this as an example of endometriosis. I am just like you, trying to understand what my body is telling me and exploring possibilities by seeing if those with endometriosis have had similar experiences.)

Hi, I'm very new here and I have no idea if what I have is endometriosis or not,and obviously there's a difficulty in that many conditions share symptoms, or I might not even 'have' anything and just getting worked up over nothing. I'll try to be as brief as I can, and I'm sorry if it ends up being long but I want to be as precise as I can be.

Since I was 14, basically from when I first got my period I've had pretty severe period pain, and when I was about 15/16 it got to the point that I would cry and find it hard to walk or sometimes even get out of bed - especially as the pain wasn't only in my abdomen/pelvic area but also my thighs. Strong over the counter pain killers helped. As the pain relief wasn't prescribed by a doctor, my school didn't allow me to take it in school, so I went to a GP for pain relief. I should mention here that my periods weren't very regular either, and my periods were often quite thick + clot-like so I wouldn't describe it as "heavy" because I didn't really bleed through anything, I have no idea if that makes any difference.

I went to a GP and he gave me the combined pill because apparently it would reduce pain, regulate my periods and hormones (I had pretty bad PMS). While it helped to regulate my period, it did little to reduce pain, and made my moods worse. I eventually went back to another GP who gave me mefenamic acid which did help. I came off the combined pill, and a few months later went onto the progesterone only pill so now I don't have periods or PMS, which is really good because it could be pretty hard trying to deal with both of them every month.

But the periods aren't the only time I feel that sort of pain. A good example is one time in between coming off the first pill and going onto the second I was hanging out with my friends and suddenly felt immense pain on my left abdomen. It was so severe I had to sit down, I was basically bent over and the pain made it hard to breathe - my friends were worried that they would have to take me to hospital. I went to the toilet and found I had started my period without realising and so it was "just period pain" and even though I was in a lot of pain I felt really embarrassed, like I shouldn't have made a deal because it was just period pain. I'm not sure when that started but the pain in my lower abdomen, normally on the left side, has been occurring even when I'm not on my period. I either thought it period related (I heard ovulation could cause cramping and pain), or it was anxiety, like just the physical pain of a panic attack or something. But more recently I've experienced it where there has been no possibility of a period or ovulation because of the pill I'm on. The pain makes it difficult to walk properly and breathe easily, but I've found mefenamic acid helps - my mum has said it's probably nothing to worry about so I haven't gone to anyone about it (at one point we thought it might be appendicitis but it was in the wrong place). Sometimes it's very sudden with no warning, sometimes it is mild for a few hours before becoming very painful.

I also have constipation, it sometimes seems almost constant, with a lot of pain in my pelvis and abdomen when I try to go to the toilet. This often comes with bloating and things which seem to be similar to IBS symptoms - my mum says it's just my poor eating, but since becoming vegetarian I've had a pretty healthy diet.

Now what that led me to thinking these could all be related to the same thing was when I was trying to work out why I had such difficulty with sex and painful intercourse - it's got to the point that I'm kinda terrified of intimacy. According to a doctor I went to a while back, I am likely to suffer from vaginismus, but she didn't actually do any physical examinations or send me to anywhere further, and pretty much told me to use lube and "hopefully it would clear up on its own" but might take time. If that is a cause of some difficulties, it doesn't comfortably explain all of the pain I feel during intercourse - such as pain in my pelvis and this kind of crampy, dull ache which is can be pretty painful. Most of the time it's really painful in my abdomen afterwards, like bad period cramps that don't reach my thighs, so I can still walk, but it's hard to ignore it. I only became sexually active about 8 months ago, and have never actually had an experience which has been painless - obviously as someone who is young and inexperienced I don't know if this is just normal, if I'm just having really bad sex, and I don't want to be coming here and seeming naive and finding issues where there are none. It was just that because it's got to the point that I'm worried I'll never be able to have a normal relationship, or even just casual experiences because I'll always have to sit them down and explain. I decided I'd kind of had enough and looked up possible causes for the pain and it pointed me to a few things, one of which was endometriosis. People have mentioned endometriosis to me before when I talked about my period, but I never seriously considered it or tried to talk to a doctor about it, mostly because I didn't want to be seeing an issue where there wasn't one and so downplay the difficulties that women who have endometriosis have to deal with, and I didn't want to 'self diagnose' myself especially if there wasn't anything the matter.

I never thought any of those things could be linked before, and honestly they might not even be actual issues - as I mentioned I get anxious a lot, I could be making mountains out of mole-hills. Do any of the experiences feel similar to anyone? Should I go to a doctor and look into it? Do they link or is it all in my head? Is it just normal? Thank you so much if you've read to the end, and I would appreciate any advice you could give me.

[Misty197]

Hi Epitola

These symptoms do sound like they could be endometriosis. I was diagnosed in August and had issues with with pain between periods and constipation I have also been told by others that painful sex can be a symptom but not experienced this myself. I would definitely go to your Drs and ask them to get this checked out.

Good luck x

[epitola in reply to Misty197]

thank you so much! that’s useful - i always feel quite embarrassed talking about some of the things like the constipation so it’s so good to know that other people have had similar experiences.

i will go check with my doctor, it’s encouraging that it doesn’t look as though i’m totally off with what could be up, and even if i am it’s still a start!

again thank you x

[Linley]

Hi!

So sorry to hear you are in pain.

1st I do not think self diagnosis is a good thing.

What I will say is that I had thigh pain, had irregular periods, had painful sex, then heavy clotted periods and mefemanic acid helped don't know how I would have coped without it. So to get a proper diagnosis go back to your GP and asked to be referred for a Laparoscopy that's the only way you can move on. Good Luck

[epitola in reply to Linley]

thank you so much! yes i was trying trying to avoid self diagnosis as best i could, evidently i don’t know for sure what it feels like which is why i asked and wanted to avoid that as best i could (i hope it didn’t come across that i was, i was trying my best not to because i rlly didn’t think i might have it till i saw some symptoms lined up!)

even if i don’t get a diagnosis it’s very good to know that i’m not alone in the experiences i’ve had, thank you so much for replying it means a lot!

[Smokeyred]

Hello

I read this and it reminds me so much of the thoughts I used to have - Why is it just "bad periods" to them when it feels like hell to me? Why am I feeling all the things that I can't explain? Why does it not feel normal?

Few weeks ago, I was new to this and I was overwhelmed by the support that women give to each other. You were brave to post this online.

I was always told that I've got IBS but like you, I've had a healthy diet so I didn't understand why they misdiagnosed me. They even thought it was appendix but I've already had it removed when I was a teen. Since then, I've had ovarian cysts and I also had cysts in vagina. Since taking hormones pills, I've had more of cysts than before!

You're not crazy at all. All the feelings you have are real and ask the pain is real. Your body tries to tell you. Go to doctors and tell them that you want to be tested and you want to get the diagnosis cos it gets you down and it affects your life. You want some scans. You say you've got endometrosis. I definitely recommend that you bring somebody with you. Somebody who has seen you struggling. It'll give you a bit of courage to face the doctors.

Hopefully this helps and good luck for this journey x

[Lofty1589]

Please, please, PLEASE see your GP and asks to be referred to gynaecology. Do your research into Endo and make sure you understand the NICE guidelines so they cannot fob you off. You aren’t too young to have it - my best friend was diagnosed at 12! I’m now 20 but was given a diagnosis at 19. I’ve been fobbed off by doctors since I was 13 and seriously struggling with my periods.

Even if it doesn’t turn out to be Endo (it sounds like it though!) then at least other avenues can be explored. Xx

[KNJR4]

Hiya,

Sorry to hear you’re in pain. Somehow you may want request to be referred to a Gynae consultant specializing in endo. You should not self diagnose, but your symptoms sound familiar. You aren’t crazy, even if a doctor, family, or friends have told you this is “all in your head.” You know your body best. Seek medical attention.

I also experienced the “ghost cramps” at various times in my cycle which made me lie down doubled over, debilitating cramps during my period, pain during sex (was like shooting nerve pain), clotty periods, IBS. Was told over the years I might have passed kidney stones, tested for bowel diseases, cyanide poisoning (once at A&E)... just find a good gynae who will check you out thoroughly. Yoga, diet, Magnesium, Vit D, reducing alcohol intake to almost none, resting at night sufficiently, drinking lots of water, and a good laparoscopic excision surgery have helped me loads.

Good luck!

[_EndoWarrior_]

I had Uterine Fibroids, Endometriomas on both my ovaries, Adenomyosis and Stage 4 Endometriosis and your symptoms definitely sound like Endometriosis to me. These all could possibly be contributing to the pain etc you are experiencing.

A transvaginal ultrasound would pick up Fibroids and Endometriomas (for me they did), Laparoscopy is carried out for diagnosing Endometriosis after this. As I had more symptoms ie. pains down leg and lower back and bladder and bowel issues I had a Pelvic MRI done which confirmed Stage 4 :Deep Infiltrating Endometriosis.

Do your research and look at the NICE guidelines for Endometriosis.