Hey everyone, I have just been diagnosed last week with stage 4 Endometriosis. Its been debilitating...
My family are supportive, so much so they are paying for me to be treated privately, which I am so grateful for. However, if ever there is a family event I feel so forced and pushed into going. My mum currently isn't talking to me because I've said I can't go to my cousins celebration party tonight. She has just qualified as an Accountant and I cannot bring myself to go. Firstly I am having a flare up, and secondly I'm struggling mentally due to just receiving my diagnosis and finding out how bad my Endometriosis is. I cannot bring myself to be happy and celebrate when I'm going through one of the hardest times of my life. Am I in the wrong here, and if I'm not, how can I get people to understand how I feel and what I'm going through? My mum was even with me at the appointment with my Consultant, and he told her how bad my Endometriosis is and the levels of pain I am in.
I have been referred to an Endometriosis specialist, who apparently will do some extensive surgery on me, how can I help to keep my pain manageable until then? I have morphine etc but I don't want to have to rely on that for however long this may be. I feel so alone with this right now. Thank you
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Ameliaxx
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Hello. I have been in this situation prior to being diagnosed, I was very ill, back and forth to doctors. Had lost my job, waiting list was over a year and physically I was getting weaker and weaker by the day, mentally it took its toll on me. I couldn’t celebrate anything, I had nothing to celebrate, so I found it hard to be happy for others. Nobody will ever understand exactly how you feel, I’m now 8 years into being diagnosed with endometriosis and adenomyosis and it’s still a daily battle, even people who are closest to me always have an opinion on what I should or shouldn’t be doing. That’s when I fall out people!
Hello it just never ends does it, I am getting a pelvic and abdominal scan at the end of the week, depending on what that comes back with I may get a colonoscopy. I have been abroad for a week and I took my period prior to it, o bled through my pad and pants and onto my towel, so heavy, it’s unreal, my novasure ablation isn’t working anymore 🥲 will you get an MRI quickly? Xx
Let us know how scan goes, hopefully something simple they can deal with.
That was not a good period, must’ve been so uncomfortable. Was holiday good?
They were saying a couple of months, I said they could go straight to op if they wanted. I don’t think much has ever showed on a scan. MRI is much better for us than CT. Gastro did CT last year and Gynae said it’s not good for Endo. Gastro should have arranged MRI to cover everything. Such a waste of time and money doing useless scans.
Morning I got the scans yesterday and the transvaginal one was really sore, I am bleeding so heavy too, what a mess I made at the hospital. Having a rough time at the mo, also anaemic, explains why I am feeling so tired etc ….
Yeah had a lovely holiday thank you. Have you been away this year? How are you feeling today?
Don’t worry about hospital they’ll be used to it and hopefully didn’t give you dirty looks and make you feel bad. That should go on the report for Gynae as a bad symptom. Not surprised you’re having a rough time, sounds awful, anaemia doesn’t help. Have you got iron?
Glad you had a good holiday 🙂
I haven’t gone anywhere no point not worth the pain getting about.
I have to say the 2 ladies at the hospital were wonderful, one was a doctor and the other a nurse. I’m actually in quite a bit of pain today over the stomach area. Have been bleeding heavy for weeks too. Yes I do have iron tablets but I have to watch as I am a Haemochromatosis carrier (with symptoms) so my iron levels can go dangerously high.
That’s a shame you haven’t been anywhere but totally understand why, it’s poop living with this 😢I can’t even be bothered to speak to people on the phone today which was my plan, are you sometimes the same?
It’s a lot to deal with, take on board etc. In some ways a diagnosis is good as we get an explanation of what’s causing the pain, do we actually want it to be Endo, absolutely not. You have to remember there is nothing you did that caused the disease, there is no lifestyle that could’ve prevented it. It’s good that your family are helping and that your cousin passed their exams, it’s just bad timing for you. I don’t blame you not wanting to go, we have to self protect unfortunately as no one who hasn’t gone through understands the pain and the emotions. This isn’t anxiety it’s your hormones that are so unbalanced we struggle.
I hope your mum can be understanding, can you get a congratulations to send with your mum for the get together.
Hi i totally understand. I was finally diagnoses in jan with endo and after a mri i have adeo, fibroids, endo cysts and my ovaries kissing my bowel.I lost my job in january and dont have alot of support mainly my husband and kids.
Ive not wanted to go to family events for the same reason, they all celebrating and im going through a bad patch, i dont like dressing up due to looking bloated. Its really hard.
Im now 6 months into zoledex while waiting 18 months for hysterectomy and im nearly pain free just odd flares but i only wanna be with my husband and kids
Hi i think you should take time for yourself your dealing with so much as it is. Stress doesn't help endometriosis as it is, so the less of it the better. You need to take care of yourself now. Send a nice card and a gift to your cousin expressing congratulations. Sending you a big hug x🤗❤️
hun until I was diagnosed my mum thought it was all in my head etc even though I had started my periods a month after my tenth birthday . I also struggled a lot as have also been diagnosed as having autism spectrum disorder , I had severe carpel tunnel in one of my hands the worst the surgeon had even seen in a younger person. Also diagnosed with high blood pressure been diagnosed with fibromyalgia as well as I had suffered severe pain for so so many years. It is really hard to make someone else see how really and truely we struggle. My mum has been more understanding as she has fibromyalgia as well and had fibroids and had a hysterectomy when she was 40 . It’s starting to sink In for her as my issues where the endo was in the pouch of Douglas and pelvis ovary’s and bowel . I had extensive surgery this year after waiting a year. I’m now three months post surgery and now in complete and utter pain to the core with my bowels and pain levels. At first I felt a little relieve and was like yeah I can. Now go toilet easier now I feel back to how it was when I would ulternatw to extreme. Constipation and diarrhea even though I keep my self hydrated. Unfortunately this disease is so awful especially when you have been diagnosed with severe endo like I have been last year. I feel so validated but it’s like when people say oh you have had the extensive op are you better now. Nope . What I was told though by the endo specialist nurse is some women think after I have this surgery I will be pain free etc but she said if someone has severe disease quite often than not they will still suffer with the pain. The reason for this is endo has its own nervous system and supply it wraps itself up not only inside and outside pelvic organs but your nerves as well. Quite often for family events etc I want to be curled up in bed as I’m tired and in pain quite often I remove myself earlier than expected to stay. The thing is pain is real and can tire you out it also effects the way you think and you can get grumpy more easily. All I advise is you need to look after yourself for you . If you have to cancel things you have to cancel them don’t feel bad or made to feel guilty. You are the only one who can look after your health . You know how you feel. I have learnt to not care what other people think anymore . And also to say no to people when I really can’t make things. I’m a year and a half of being 40 it taken this all this amount of time to stand my ground. Please look after yourself I know it’s hard but this community understands you . Us women need to stick together and make others aware . All I know now is to take each day at a time and that has been hard as I used to think too much in front and try to organize myself but failed miserably. Just because your family are paying for your treatment don’t let them make decisions for you how you should live your life . It doesn’t matter and shouldn’t matter . Endometriosis happens to women regardless. If you need support this community can help as we can understand to some degree. There is a Facebook group called endometriosis information and guidance group there is lots of information on there. X
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