Feeling upset and worried: Hi all I’m new... - Endometriosis UK

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Feeling upset and worried

Lozza4444 profile image

Hi all

I’m new to this site and to this pain.

Came off the pill about six months ago. All was fine until four weeks ago. I had period pain four days before my period started. Had a week of bad period pain. The doc has referred me for a trans vaginal scan which I have on 20th June. I got signed off work last week and I’m due to return tomorrow, but I don’t know how I’m going to cope. Everyday for the last three weeks I’ve had tummy pain or fatigue. I’m crying quite a lot which is unusual dor me. I’m getting really down that I have to put up with this every day. Doing the washing up or cooking a meal is an achievement. I’m sorry to sound so negative but it sucks. I’ve not been diagnosed with Endo but doc has suggested that it could be what I’m suffering from. Is it a long journey ahead?

12 Replies

I’ve been going back to the doctors for years and years. I feel for you I had a scan and it was clear having a laprascopy on the 12th July. Xx

Lozza4444 profile image
Lozza4444 in reply to waltonk

I feel for you too. How can you bear pain and fatigue everyday?

Do you mind me asking when you had your scan? Good luck with your lap xx

waltonk profile image
waltonk in reply to Lozza4444

I had my scan last year but I kept putting off the op but I’m going to have it now. I have text book ovaries and uterus and womb. Doctors would fob me off and say I was just unlucky with heavy periods I went to a and e and saw a female doctor she gave me 30mg/500 xo codamol and they are ace I’ve tried mefanic acid and the other one and they don’t touch it. I have the biggest clots and wear night towels during the day and still leak x my partner is very supportive. Xx

You poor thing. It sucks!

If you can take anything from my experiences of trying to work through all of this over the past 4 years, it's that you have to look after yourself and not to prioritise work. You'll suffer more if you push yourself. Just stay off work until you're well enough. I wish so much of followed this advice. I have been signed off with 'suspected endometriosis' at one point so don't worry about needing a diagnosis for that. It may feel that you can't take time off (that's what I told myself) but they're is always a way. Sometimes the way might not be what you want but it's what you need.

Even if you do have endo, your hormones may still settle so don't assume you'll continue to feel this way. Fatigue is my worst symptom and I definitely had a peak period of fatigue where I literally couldn't do anything, just being alive felt like too much. It was actually painful how fatigued I felt. Now, it's still hard but it's definitely calmed down. Maybe it's due to me finding ways to cope and finding things that help but either way, it is a bit better. There is hope.

In terms of what lies ahead. It's so hard to know. But the first positive for you is that it's your GP suggesting this so you're not having to convince them as many people do. So that's one battle you're not having to do. The ultrasound won't pick up endo but it's routine for any gynae complaints to have that first. From that, they'll likely refer you to gynae. It will likely be a long wait. The target is 18 weeks but for some areas it's longer and they'll then look into things a bit more. Ultimately you'll need a laporoscopy to investigate for endo. From my experiences, I would suggest asking any gynae you see if they specialise in endo and to ask for one that does (if it does look likely). I would also ask for an mri as some endo can be missed and if you get a lap & mri, it covers it all.

Use this site to help. There's so much advice available for ways to cope. If you're struggling with a particular symptom, just ask and I'm sure people will give you lots of ideas for things that have helped.

You are not alone in this and they're is a lot of hope 😊

Lozza4444 profile image
Lozza4444 in reply to weekari

Thank you so much for such a kind a helpful reply.

In terms of work, it’s good advice and I’m going to try to put it in to practise, easier said than done! I get worried about what steps my company will take if I take too much time off, I’ve heard they have policies about sick leave that they implement when people take too much leave. And I don’t find my boss a very sympathetic person! But that aside, my health comes first and that has to be my focus.

Thank you for reassuring me that there is hope! I’m desperate to feel well enough to go back to my exercising and feeling good.

Thank you so much again for your kindness. It means so much. This forum is a really useful site.

Wishing you all the very best.xx

weekari profile image
weekari in reply to Lozza4444

Awe no worries. I think we know how tough it can be so it's good to know we can maybe help support someone else.

You do have a genuine health problem so you have some rights in terms of being ill. I worried myself so much about it - I had a job where a lot of people relied on me and I had a lot of responsibility and I just thought I had to keep going. I worried what people would think too and think that my managers would get tired of me constantly being sick but it's all just my issues. I've been off sick for 8 months now and I'm actually about to leave on terms of ill health but I've come to terms with that. I actually think it'll ultimately be the best thing for me as my job was half killing me. I only got diagnosed 5 weeks ago and I've not had any treatment or anything so I'm godly ill be able to get myself back to working in some capacity eventually.

The one thing that's helped me so much with the fatigue is to rest. It may sound stupid. When I first heard that, I thought that all I did was rest but when I had rest explained to me as complete physical and mental rest, where your eyes are closed and you are not doing anything, I realised I never did it,other than when I slept. Now I try and give myself little 15 mins or complete rest throughout the day. Phone down, no reading, no TV, eye mask on and just take some deep breaths. Honestly, it's so helpful.

Good luck for giving yourself time off tomorrow. It'll be hard but just listen to the part of you that knows what's best for your health, not the worry part!


Lozza4444 profile image
Lozza4444 in reply to weekari

Yes. Resting definitely helps. I can’t believe how much I can sleep at the moment!

Fair play to you for letting go of work and taking care of yourself. It sounds like you have a good outlook and strong approach. I’m sure it will work itself out in time x

Hi Lozza, my situation sounds very similar to yours I'm in pain with my pelvis and recently gone back to work after ending up in hospital with pain so bad I ended up on morphine, not been diagnosed but had all the scans and nothing found having a laraoscopy soon. The pain is difficult I struggle with just sitting down at work all day. It will get better it's finding the best way to manage the pain and we are all here to support each other! The advice I would give is be pushy with hospitals/doctors and get the help you need. Here if you ever need a chat :)

That sounds awful Nat. How long did you have to wait for your lap?

Yes, I think it’s a great place here for support and advice.

When is your lap? Hope it goes well x

Nat21 profile image
Nat21 in reply to Lozza4444

I've been suffering just over a year pre op assessment is July then gotta wait for a date, haven't got a date yet but should be before the end of this year. Glad you're finding this site useful I've only joined a few days ago too and it's been a big help. :)

The endometriosis charity has a helpsheet on your rights in the workplace: endometriosis-uk.org/public...

I hope that your scan goes well. x

Lozza4444 profile image
Lozza4444 in reply to LittleG22

Thank you. That’s really helpful. I will take a look x

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