New to Endometriosis

[Jess96]

Hello, my name's Jess and I feel like I need some support, and I have some questions. I'm 19 years old and have recently been diagnosed with Endometriosis. When I was about 15 I was misdiagnosed with IBS, and it was only a few months ago that I'd first heard of Endo, and been told by my gynaecologist that this is the cause of my pain.

I get really bad period pains. And even when I'm not on my period, I get a pain in the left side of my tummy, below my hip bone. This pain can happen every day, any time of the month, but it is also related to stress (which happens quite often, as I get anxious about a lot of things.) Also, when I am on my period, for the first couple of days, I get an awful pain in the centre of my chest. It feels like my torso is being crushed and it leaves me in agony. I am terrified of getting the chest pain because it's almost unbearable. Pain killers keep it at bay for only a few hours before it comes back.

I am currently on the pill. First I was on the combined pill, but I'm now doing a 3 month trial on a new one, to see if it will help. I wasn't even supposed to have a period this month, but for some reason, I came on my period when I swapped pills. And like always, with my period, I got the chest pains. My gynaecologist advised me to go to A&E and have them check my heart, just to make sure. I ended up staying overnight in hospital, but turns out my heart is fine, so I've been told to continue my path following the Endometriosis treatment.

So that's where I am at the moment, but I think about it every day and it really gets me down. My parents and my boyfriend know what's going on, and they understand as much as they can, but sometimes I feel like I can't get the full support from them that I need, because I feel like I'm alone in this struggle. It saddens me that there is no cure to Endometriosis, and that for the rest of my life I'm going to have to make decisions based on if I think I'll be in pain or not. I've missed out on outings with friends because I'm in too much pain to do anything. I live 3 hours away from my boyfriend. I'm in the process of moving back to my hometown, but for now, I visit him every other week. But I've had to miss out on visiting him a few times because I've been in pain. Or my time visiting him has been ruined by my pains flaring up. Along with that, I need advice on sex. Me and my boyfriend are both virgins, and we've tried a few times, but we've always stopped because it causes me a lot of pain. He is very understanding, but will I always be like this? Will I never be able to properly have sex with my boyfriend?

Another thing that upsets me is problems with fertility. I'm not wanting children yet, but I think of the future and whether I'll be able to have children or not. My gynaecologist said that the only way to find out how bad it is, is to have surgery, but she's decided that it should be the last resort for me. But it tears me apart thinking I might not be able to have kids, and that I'll never be cured of it. Last year I didn't have any of these problems and I remember feeling free. But now I just feel trapped, like it's controlling my life.

When I was in the hospital, they were bewildered by my chest pains. Does anybody else get chest pains because of endometriosis? The doctor also told me that I didn't have endo. He was very adamant that I didn't have it. But I'm guessing he looked at all my swab results and ultrasound scan results, and he must have assumed that I don't have endo because they say 'clear'. But my gynaecologist told me that endo doesn't come up on those tests, so of course they will say clear. I didn't figure this out at the time though, so at first I was confused about where the misunderstanding was as to whether I have it or not, then I believed the doctor and was so relieved that he said I didn't have it. But now I feel let down. I got my hopes up just because he made a mistake.

This is my first post on the website.

I would appreciate it if people could discuss this matter with me. Thank you

[JeanOsborne]

Hi Jess just wanted to let you know you're not alone. Can I ask how you were diagnosed? As it can only truly be confirmed through a laparoscopy. If this was not the case then you really need to push for it and ideally it should be done by an endometriosis specialist. If you search on here for a lady called Lindle she will be able to help you find one and offer a lot more advise. Hope this is of some help. If you want to talk you can message me. Stay strong Hun.

[Jess96 in reply to JeanOsborne]

Based on my symptoms, my gynaecologist suggested it was most likely endo. She told me to take the combined pill (the pill that I was on first) without a break. She said if I get the chest pain without my period, they're not linked. But if I didn't have my period and also didn't get the chest pain, then it's linked and she thinks it's linked by endometriosis. So it's not a definite diagnosis like it would be if I had surgery.

She told me that she wants a laparoscopy to be a last resort for me, because I am young and I've only just started on this process. So she wants to see if the pill will help. But isn't the pill just covering it up? It's not actually getting rid of it. But she also said, even if I have surgery, by the time I want children, it could have come back anyway. And that a great amount of pain doesn't correlate to the amount of damage that's inside.

Thank you for your advice. I feel quite low at the moment, so I really do appreciate your help

[buddie29 in reply to Jess96]

Hey Jess,

I'm 19 and had my first lap after my 18th birthday so just saying i don't think you're too young, It's better to get at and try to sort this illness out before it gets worse as you get older. The pill is just masking endo it may help with your periods but endo will still be there. The only way to sort it out is to have a laparoscopy. To be honest i think you need to get a second opinion from a different gynecologist as just taking the pill and seeing how it goes just isnt good enough, especially if its affecting your life so much. If you type in BSGE accredited centres then you'll get a list of all the centres that are believed to be qualified enough to properly deal with endo. You can then chose one go back to your GP and ask to be referred there.

Hope that helps

I'm always here if you need to talk, being the same age i feel like i would have liked this much support when being diagnosed so i try and help every young person as much as i can

Becca

xx

[Jess96 in reply to buddie29]

Thank you for the support and advice, Becca. Have you found any complications with the laparoscopy? Have you noticed a change (good or bad) after having the laparoscopy?

I get pain almost every day, so I guess that's what this pill will hopefully cover, but it would be nice if it was taken care of more efficiently with surgery. But as far as I know, Endo never properly goes, so do you still get any problems with the symptoms of it?

Thanks

[buddie29 in reply to Jess96]

I had no complications at all after my lap, quite lucky unfortunately I didn't go with a BSGE centre and I'm still getting the same pain so think I still have Endo somewhere in me. Most people who go with specialist feel so much better after a lap though. I'm quite lucky being that I only get pain on periods and bowel complications but the pill has helped a lot in controlling my cycle as I was really irregular before. As long as you get all Endo excised it cant grow back, what I've learnt from the group, so that's why you need to find a really good surgeon.

Xxx

[Jess96 in reply to buddie29]

Oh I see. I had no clue that if you get rid of it all, that's it. I've been to the gynaecologist quite a few times now, and every time I've had to see someone different, so they all say different things.

I usually get overwhelmed by all the information they give me, so I think next time, I'll make a list and take it so I can get all my questions answered.

[buddie29 in reply to Jess96]

Yh that is a good idea, take a list of questions and some plain paper so you can write down what they say

[Jess96 in reply to buddie29]

Yeah, thank you for your advice

[JeanOsborne]

Hi Jess, I was diagnosed in July via a lap but have had symptoms for nearly 30 years (Drs wouldn't listen or didn't want to know). I'm now 42 and was trying for a baby for 4 years when I found out. Now that will never happen as endo has badly damaged both ovaries and tubes. My bowel is stuck to my womb and the endo Is now penetrating the bowel. I now need to have hysterectomy ( due to adenomyosis) ovary removal, excision and possible bowel resection. I'm not telling you this to scare you but if you can get the surgery soon rather later you will stand a better chance of starting a family one day, especially if you have excision through a specialist. At least if you have a lap you will at least know either way . It may turn out to be something else that can be sorted out. Good luck . I'm here if you want to talk more.

[Jess96 in reply to JeanOsborne]

I'm sorry to hear about that, Jean. For some reason, doctors often take a lot time to give a diagnosis when it comes to this sort of things. I've had loads of tests done and all they seem to want to do for me is to give me pain killers, which isn't going to help me in the long term of things. But I agree, allowing this to continue with no real helpful actions isn't going to be the best thing for me.

I've sent a message to the woman you suggested I talk to. But can't the endo tissue come back even after surgery? My gynaecologist said that it could get better on it's own, or it could get worse on it's own, but it will never be cured.

[JeanOsborne in reply to Jess96]

Hi Jess endo will never just go away by itself , if it is excised and they get it all it shouldn't come back.

[rach3110]

Hi Jess, so sorry to hear you have this horrible illness too. And that's exactly what it is, an illness, despite what people think. I'm fairly new to it too, I got diagnosed in July after my laparoscopy and I am still trying to manage the pain. I can't really assist you with any answers to your questions, as I am still trying to find the answers too, but it may be of some comfort to you to know you're definitely not alone in feeling like this. It took 4 years for me to get a diagnosis. Like you, I feel that I an very much alone despite my family and boyfriend trying their best to be supportive. They don't understand how I can be fine one minute and curled up in agonising pain the next. My partner and I don't have a physical relationship either, and we haven't for quite some time, but I'm hoping that will change in time. I have tried many different types of medication, have the coil fitted, and an on the mini pill, and I am still in pain most days and bleeding continuously. You must ask for a laparoscopy as your first step towards this as it's the only way to diagnose it for definite. You are young, yes, but it only gets worse the older you get. I tried since I was 19 to get the surgery done and it was only done this year (I've just turned 24) and have been told I shouldn't leave it too long before I consider having a family. Please push for it while you are still young. Xx

[Jess96 in reply to rach3110]

Hi Rach. When you got your laparoscopy, was it just to diagnose the endo, or did they also remove some of it?

But yeah, it's a real inconvenience when it comes to being in a relationship. I hope it won't always have in impact on everything I do.

I'm sorry to hear it's taken so long to get the diagnosis. I guess the only good thing is that I have the chance to catch it early. But yeah, if someone told me I have a time frame to have children, I would definitely do it, as I wouldn't want to miss out on my chance, but then I guess you have to consider how the partner feels about having children at a certain age. But I hope everything turns out well for you. Let me know if you find some answers. And just let me know how things are going in general.

Thank you for your advice

[rach3110 in reply to Jess96]

They did the laparoscopy to shut me up cos they were convinced it was all in my head, but they found endometriosis (I had told them all along that was what I had) and while I was in theatre they cortorised what they could so I have had some treatment for it thankfully. We are just not in a position to have children yet, we live in a tiny house and he works away a lot, we aren't financially ready so it wouldn't be fair to put the added pressure on us. Please let me know how you get on with getting the surgery sorted, I hope everything goes ok and thank you x

[Booboo08]

By the sound of your message and pains it sounds like anxiety.

I get palpatations around period.

endometriosis can cause anxiety,but you need to try and remain stress free to keep it at a manageable level.

You can get a book called cognitive behavioral therapy (cbt) this will help.

Also kalms are natural tablets.

You will need to stay calm and help yourself though before you see results.

Avoid all stimulants like coffee,tea,coke,alcohol and cigs.

do the cbt. Get lots of sleep and rest and see if you feel better.

with regards to having sex and children. it won't always be like this. Go see the Gp Ask to speak to a counsellor and see if that helps.

also tell doc you want referring to gynecologist for investigations.

(don't leave it like lots of woman do)

you are still young so thats in your favor with regards to fertility.

Try these things and see how you go,come back and let me know. Your welcome to private message me.

Aniexty can be debilitating and cause lots of body aches and pains. As its your body's way of saying I'm stressed.

stay positive and come rant too us. we all do it,makes its feel better knowing your not alone xxx

[Jess96 in reply to Booboo08]

Thank you. Yeah, I am quite a stressful person. For me, the things I don't like are social situations. Stuff like going to the doctors and waiting, knowing that I'm next to be seen. Or going for a meal with people I'm not totally comfortable with. Or even sometimes ordering my food. And presentations in front of the class used to be the worst for me when I was in school. So I do often get the pain in my left side in situations that make me feel nervous. But then I also get it when I'm just sat watching tv, or sometimes I'm even woken up by it in the middle of the night. So it happens when I'm relaxed too.

I'd say I'm quite a healthy person. I don't drink or smoke. I've never had coffee or tea. And when it comes to coke, I only drink that if I go out for a meal. But on a daily basis, I'm always drinking loads of water. Everywhere I go, I take a bottle of water with me.

I haven't spoken to a counsellor, but it's the gynaecologist I go to see for my appointments. My doctors got to a point where they couldn't do much more for me, so they referred me to the gynaecologist, where I have had loads of tests done, but not surgery to properly diagnose it.

I'll make sure I check out that book. Thank you for your advice

[Booboo08 in reply to Jess96]

its worth a read can get cbt for dummies on eBay to.

xxx