Feeling lonely and scared. Would love sup... - Endometriosis UK

Endometriosis UK

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Feeling lonely and scared. Would love support.

alicewiffen
alicewiffen

Hi. Really nervous about writing on here and I am new to this today.

I have been suffering from the most horrific pain in my tummy and pelvic area. I have extremely heavy periods and they are so painful that i have passed out on a couple of occasions. I get a lot of pain during intercourse and not only does it hurt like sandpaper rubbing me but when my partner enters i also get a deep pain really horrible that it makes me cry. I also get lower back pain and feel constantly sick (Keep losing weight as cant eat)

The weird thing is that this all got a million times worse last October (2017) where i was bleeding for 8 weeks solid heavily until they gave me a tablet to stop the bleeding as i was getting anemic from the loss of blood. Now i am in severe pain every single day and sometimes i just dont know how to get through another day.

I am self employed and have my own business dog grooming but omg getting through each day is agony and I just dont know how to go on like this anymore i am getting so depressed.

I have been given morphine and been on this for a month or so but no other tablet will stop the pain so have to have this even though i dont like the feeling it gives me. I am told to have a laporoscapy but the waiting list could be extremely long.

I had an ultrasound which appeared normal but I am so so so certain I have endometriosis from all the symptoms etc. I am so scared and feel so alone and dont feel like the doctors really know what is going on.

I just need someone to talk to as I am so scared and dont know what to do anymore. All this waiting is making me get more and more low each day.

Any advice would be amazing. Does this sound like endo to you?

Lots of love

Alice xx

16 Replies
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Hidden
Hidden

Hey. You definitely sound like you have endo because of your symptoms. It is not normal to bleed that long or have severe pain during periods. I am glad you are going to have a laparoscopy as they may be able to remove some or all of it if they find anything when they go in. Are you seeing someone specialized in endo?

I’m sorry you feel lonely and scared. We have all been there. In the mean time heating pads help a lot and being easy on yourself. You have a physical job so I know that isn’t easy but don’t be upset with yourself if you’re not at your 100%.

I was lucky and got my first surgery within 3 weeks. But it is a bit different here in the US.

Feel free to message me any time if you need support or have questions I may be able to answer. Good luck x

alicewiffen
alicewiffen in reply to Hidden

Thankyou so much for your message it means a lot to me. And yes I am on the waiting list for a lapo but the doctor said it cannot 100% always see endo so im worried it will all be for nothing but i cant go on with this pain anymore. I am going to a private doctor next monday who is the specialist in it as i have been to another doctor who didnt even seem to know what it was! He said you dont get tummy pain with endo?! what!?

Hope you are recovering well! Did they sort it out enough that you dont feel the pain anymore?

Thankyou! xx

It could be endo, I’m shocked the doctors aren’t doing more to find out what the issue is. Heavy bleeding like that isn’t normal although I’ve had it too along with the pain. Hot water bottle required, also avoiding certain things like caffeine and alcohol (bit difficult this time of year but I’m going for dry January - we’ll see). xx

alicewiffen
alicewiffen in reply to AJJ123

Its been so hard with doctors and they keep just sending me off with more morphine which is crazy as i dont want to live on the stuff! I am going to a specialist next week though so hopefully he will be more understanding! I am just so scared of how long i am going to have to deal with the pain.

Ah thankyou thats good advice I will give it a go!! :)

Have you had a laporoscopy? xxx

I used to take ketanol, 4 a day, to get the pain down,l. Can’t imagine what’s it’s like to live in morphine! And the fact that they still give it to you is just ridiculous! I am so sorry it’s happening to you.

I was lucky and had my lap after 3 weeks, I’m in West Yorkshire. And I recovered very quickly too. There must be a way of getting it quicker!

Thankyou so much. Going to a private doctor on monday so hopefully can hurry things along a bit.

I really hope you are feeling okay now and glad that you recovered quickly from the lap!

AJJ123
AJJ123 in reply to alicewiffen

Yes I had a lap in August, I had stage three endo which they lasered away, I went through a bad patch last month though. I begun having acupuncture a few weeks ago for the pain and I must say it really does work, I don’t take any painkillers. I feel way better, emotionally and physically xx

alicewiffen
alicewiffen in reply to AJJ123

Oh wow that is really interesting i have never done it before but will look into it. thankyou so much!! xx

You are not alone, I wish I could hug you! I felt exactly the same, I work in an office but it's a 45min drive each way which seems impossible when I'm in agony. I can't imagine how hard it must be doing a physical job 😓 Your symptoms sound like endo, I've got my lap in a few weeks so haven't been diagnosed yet either.

I initially went through the NHS but there was a 6 month wait for a laparoscopy so I changed to private. I couldn't believe it when they told me I could have the laparoscopy before Christmas if I wanted. I decided to wait until after Christmas (almost 2weeks away now 😱!). Before I had the surgery brought forward I was close to breaking point. Stress made my symptoms worse but I couldn't help worrying day and night about how this was ruining my life and got myself in to a rut. I was on a high dose of codeine everyday with Naproxen but I hated the way it made me feel. I saw my doctor and he agreed we needed to find a balance with pain and diet. So I've cut out dairy and red meat and I feel so much better! (I slipped up a few times over Xmas and have paid for it since) I've also increased the amount of anti-inflammatory foods in my diet (try googling it). I drink peppermint tea and take turmeric tablets and probiotic tablets daily. I would also recommend seeing an osteopath every few months if you can/ don't already - it's really helped my lower back pain.

When I felt like everything was going to shit I sat down and made a plan. I started by writing down all of my symptoms and the different ways my life was being impacted and what I wanted to change. I then thought about solutions and started making small steps towards what I wanted to achieve. It's not easy and there will be highs and lows along the way but if I compare how I feel now to how I felt then I now feel 1000x better. I'm still in pain every day but feeling in control gives me the strength I need to carry on.

If you ever need to talk message me, you're not alone in this.

Lou xxx

alicewiffen
alicewiffen in reply to LouLouT

HI Lou,

Thankyou so so much for taking the time to write your message. I am so so sorry for what you are going through too. It really is awful and so scary and sometimes difficult to see the light at the end of the tunnel!

Thankyou so much for your advice and i couldnt agree more that sitting down and writing a plan is so helpful! I also do a lot of yoga and try to remember the things i am so lucky to have in my life still. Its just so hard sometimes isnt it!

The NHS waiting list is horrific and i thik i have been put as urgent but that still takes 4/6 weeks apparently and dont know how to speed it up :(

SO scared about having to cancel all my clients as being self employed i have worked so hard building it up!.

Hope you are feeling okay at the moment! xxxx

LouLouT
LouLouT in reply to alicewiffen

It's really hard trying to motivate yourself when your exhausted and constantly in pain. I'm working on not being so hard on myself in 2018. You're doing everything you can and trying to find out what works best for you - it can be frustrating when there's no quick fix!

The NHS waiting list is rediculous and now operations are being cancelled/ postponed just adds to the frustration. I don't know either 😔 What you can do is keep going back to your GP. It sounds like you've tried every pain relief option out there, could you be referred to a pain clinic?

Could someone run your business for you whilst you recover? Even if it's just for one week? If not the main thing is getting you better and you'll need plenty of rest to do that. Loyal customers will always come back, your health is more important.

I'm ok, my period has come 5 days early so I've had to rearrange my plans this weekend (yet again). At least I get the weekend to rest though.

Hope you're doing ok and get some much deserved relief xxxx

So sorry you are having such a terrible time. It must be so hard to cope. I really hope your lap is soon. Do keep chasing for cancellations and keeping on their radar so they know how bad you are.

Is going private something you could contemplate?

Thinking of you.

alicewiffen
alicewiffen in reply to Starry

Thankyou this means a lot to me. I looked at private and it was just over £5000 and that i just sadly cant afford...and it breaks my heart but i know i just have to keep going and hope to get through this soon!

Thankyou xxx

I’ve had trouble like this too I’m 44 had painful periods clots pain during and after sex bowel issues headaches alsorts I saw a specialist 2 years ago who said I had endo offered me a laparoscopic but at the time I couldn’t as my daughter was ill so opted for a cool to be fitted which was the biggest mistake I made I’ve had nothing but trouble with it I’m in agony all the time I’ve had a scan that said I now have a cyst and the coil is lying sideways in a funny position I can’t go to family planning to have it removed as they won’t do it because of the position and I am n a waiting list to go back to gynaecologist but it’s been 6 months now it’s ridiculous I feel so low at the moment and just wish someone would do something my doctor just gives me a low dose co codoamol which isn’t working at the moment I’m very tempted to just ask for a hysterectomy when I go to see them as I’ve had enough

alicewiffen
alicewiffen in reply to mando44

Oh no this is awful for you. Its so sad to hear all these stories of what everyone is going through.

I dont want to go and use a coil either. I am on Yasmin again (contraception pill) but i was on the implant which i think flared up the endo maybe. not too sure and its all so scary as the pain is unreal.

I really hope you are okay and all the pain comes to an end for you. I know the frustration!!!

Hidden
Hidden

So sorry to hear you are in pain and I agree the waiting time is terrible. I am can only be seen in April for second opinion on full hysterectomy by keyhole as I have suffered with endometriosis for a very long time. I have phoned to see if there is any cancellation. I am looking at going private and looking into it.

Good luck.

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