Can someone provide support or advice right now on what you would do. Iām sat here going out of my mind. I am in agony I could cry.
Yesterday attended the hospital for a doctors on call app, she checked me over, prescribed me strong codeine, told me my stomach is tender and swollen (something I already knew) and rang the other hospital 60 miles away as thatās the only one with a gynae ward. They said to not come to them until they absolutely know whatās going on. But this is my struggle!! Iāve been told I āprobably do have endoā but obviously you need the keyhole to diagnose.
She gave me 2 options.
Option number 1; walk back around and go through the main doors of A&E (4th time in 3 weeks) to have another set of bloods taken to see if anything new has popped up and get treated there. Even though last time I ran out crying because they said they donāt understand why 111 keep sending me there as thereās nothing they can do, and sent me home with 3 diff types of antibiotics ājust in caseā I had an infection!
Or option no.2, wait until tomorrow (Monday morn at 10am) for my gp to go over my referrals and see what they can do.
She seemed to be nice and tried to understand what Iām going through but everyone else makes me feel like Iām overreacting and wasting their time.
Iām in agony again today, meds have done nothing, used hot water bottles, had a bath, and slept loads because Iām so fatigued and tired but keep waking up with agonising cramps.
I just donāt know what to do. Iām trying to stretch until tomorrow to speak to the gp and hope and pray they do something. I am so scared nobody is taking me seriously. Been told I most likely have endo but canāt get a diagnosis until I have surgery. But when will that be. Iām only 21, all my friends donāt have this pain.
I just want a period to come and go and clear out my uterus and have normal cycles with no pain, is that too much to ask forš.
Instead I havenāt had one since May and had extreme pain everyday. No UTIās, & negative pregnancy tests. My belly is so hard and swollen and painful and my cramps are making me feel physically sick. I really donāt know what else I can do. Keep being sent away with boxes of meds that arenāt helping at all.
What would you do right now if you were me?š„
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Jess_cole
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This is a tough question. If you know that you can cope until tomorrow morning then wait. What is your gut instinct telling you to do? Listen carefully. You are in my prayers too. Yet honestly option two seems the best bet. Also make a list of symptoms in case.
Speak to your GP tomorrow as they may be able to request an urgent appointment with a consultant. If the pain is really too much call 111 as they should be able to offer pain relief. It can be really scary to be in alot of pain and noone take you seriously, so if you do ring 111 I would be direct and say you have suspected Endometriosis and need pain management as that could help.
For me hot water bottles, Codeine, Diazepam, CBD oil help when the pain is unbearable but I'm sure others can offer more advice about what theyve been prescribed long term. Camomile tea helps me keep calm when I'm trying to cope, and Peppermint Tea helps when I'm feeling nauseous and bloated.
In the long run do some research on switching to an anti-inflammatory diet as this will help alot while waiting for a diagnosis. I'm really sorry you're going through this right now. Keep strong xx
No probs. Sometimes just keeping your mind busy can help ease pain, or at least take your mind off it. Make a symptom diary as this will help next time you talk to the Doctor, and have a look through the forums for any tips and tricks others have suggested x
I feel your pain, I have been having constant stomach pains and feeling nauseous everyday all day for over a year. Doctors havenāt been doing anything, the only tests they have done are ultrasounds and blood tests that gave the same results of nothing. I have been on many types of pain killers, strong ones that my body ended up getting used to and started making my pain worse. I have finally been referred to a gynaecologist although it took me a year to convince a doctor to test me for endometriosis. And yet because of Covid-19 I canāt be tested for it and receive treatment although I am in so much pain it affects everything, my sleep, my relationship and day to day activities.
I would go back to a and e and keep doing that as it goes on record .even if g.p looks at referral thereās nothing what can be done right now Iām saying that in the nicest way as Iām sure you donāt want to hear that Iāve waited for a year for a referral and Iāve had to go to a and e lots of times and Iām no closer to being referred .tell them you have endo and to make sure itās written on records so it Dosent get missed and you are seen quickly when things are up and running again .and so you know a and e will just give pain meds again as.as hard as it is to hear they are not equipped to treat you .you need surgery or some kind of treatment you need a referral anyway and quick
For me it used to be like that also for a whole year. Got rid of the uterus!
It was a 20 cm thing and a 2 kg
Hang in there- know its hard and i hope help comes down to you with more clear answers regarding what are the next steps for you!.
Hope you manged to control your pain over night. Unfortunately there's not much they will do.... But you can get them to expedite your appointment your gp can write a strongly worded letter exlaining your pain, your struggling on a daily basis, numerous visits to A&E, that's how I got my hysterectomy so quick because my gp expedited it and hosp visits my consultant took it to hospital management told them this lady cannot wait any longer as I was due to have it in April so I'm in for mine next thrursday. Have you tried mefenamic acid, hasn't worked me but that's specifically for pelvic pain xxx
I'm so sorry to hear you've been in this situation, especially since I know how you feel as I was in the same position two weeks ago.
Do you have people that you live with? I know for me I would have to go to call an ambulance if I didn't have my partner and housemate as it gets so bad I can't even walk to the bathroom on my own.
I use the 'Andrea Mankoski's Pain Scale' from the Endometriosis.uk website
when I'm like this so other people know how bad it is.
I think if you're on your own and in that much pain again then either ask someone to take care of you if possible, or call 111. It could be so dangerous if you're there alone and the pain got so bad that you fainted.
I hope the pain has eased now and if you decided to call you GP this morning I hope it went well.
Thank you for your reply and sorry you feel this way also. Iāve put an updated response on my page about what happened. Iām not long home and feel so upset. I also have been feeling faint all day and am currently laying down because of it.
Iām going to call again as Mondayās appointment went so badly I ended in tears going home without being listened too. Iām going to see someone else tomorrow hopefully šš¼ x
talk with your GP about a referral to a specialized endo clinic.
Take Buscopan and magnesium to help with cramps. (Initially higher doses to help alleviate faster )
Birth control pill > take continuously: this is one of the options to calm down endometriosis. Less often your periods are, less active endometriosis should be. Very simplistic but you know Google š
I donāt know what your situation is of course, so hopefully you can see a specialist who can help you soon.
Hi thanks for the advice, unfortunately I had an appointment with a gp today and she told me itās up to the gynae to decide if my case is urgent and unless I am a cancer patient I most likely wonāt be seen for a year. I was mortified hearing that. Also thanks for the medication advice. The birth control pills donāt work for me as they cause me so many issues. I feel a little lost now...
That is one major backlog. Maybe give the gynae office a call. They probably know more and can give you a more precise estimation/try to help you sooner?
Hang in there!
I went on and went on and went on.... Literally to the point I prob drive everyone mad. Even though I've had a good 10 years of this the past year has been the worst. Ring gyne, if your referrals gone through you would have been appointed a consultant ask to speak to there secretary if you have no joy with your usual gp ask to speak with another you have a right to have your appointment expedited I'm not a a Cancer patient, and mine had been expedited 3x before my consultant took it to management to get my op for next week there trying to fob you off they can expedite it!! Mine was expedited solely because of pain!! What aload of rubbish xxx
Sorry to hear you're in this much pain. I seen a post further up telling you to tell them you have endo. I wouldn't recommend this if you haven't been officially diagnosed as you should remain completely honest with them.
I was in your position a few year ago, no one would listen to me and a gynae consultant told me the pain was in my head and to go home. I just kept going back to the doctors and to a&e and in the end they do start listening to you, you just need to remain strong and keep pushing them. I've now had two laps which confirmed endo all over my pelvis and inside my bladder. You know your body better than anybody else so don't let them fob you off xx
(2 week appointment) otherwise it will be 4/8 or 16 weeks from now.
Donāt give up until you see a consultant. Iāve been there and cut a 4 year story short I had adenomyosis so had to have an abdominal hysterectomy basically due to the size my uterus had grown too and the 14cm fibroid I was told was a few small ones.
The moral of the story is if they had found out what was glaring obvious from the start I could have had key hole Instead of being fobed off with appointment after appointment basically what I can only describe as delaying tactics to fit in with the nhs budget, I see no other reason why they would be in denial of something that you can google your symptoms and out comes they answer it took consultants 4 years to work out š³.
Iām not saying thatās what you have but itās so similar itās possibly endometriosis or adenmyosis, you will need an MRI to confirm if adenomyosis, good luck and donāt give up keep on and on and on, best to make that call when the pain is at its worst that made me stronger to deal with it and more determined although probably a bit more hormonal, take care xx š
Thank you for your kind words and support. I think without anyone else going through similar I would probably suffer and not know what else to do. I will keep trying. So sorry you had to wait so long for someone to do something! How awful. Thank you, you too x
One thing you may want to consider until you can get the referral is to stop your periods temporarily with back to back birth control pills. It might give you the temporary relief that you need and will help to slow down the new growth of Endo. I was on back to back pill for about two years before they realized I actually have thrombocytosis which is an excess of blood clotting blood cells. So I now am trying out lupron and the mirena. Honestly not having a period has been the best thing for me.
Unfortunately I am allergic to lots of the pills, I have tried many and been on lots of contraception but it all effects me! Although at the moment I havenāt had a period since the 19th May and I donāt know why it hasnāt come back.
That sounds awful and very similar to my own situation. I ended up going to see a consultant privately because I was fainting all over the place.
You MUST keep pushing, they have to be forced to do something. I find that most people I meet with this condition had to fight for a diagnosis, if that means you are in A&E each month so be it!
Convince your GP to refer you on, tell him you are convinced you have endo so they need to treat it. If you steer the ship that way they have to put something in place to rule out endo.
Itās unfair for you to be in this much pain for this long. I have way too many people who literally have lived with the pain for years because no one took them seriously. But you might want kids one day and you also want a pain free life. Donāt give up! You are in the right and you have a right to the appropriate treatment!
I remember being 22 and also being told I was making this up in my head and I had to āget throughā the pain.
Routing for you!
Someone suggested writing a letter to your Gp, happy to help you send something strongly worded if need be.
This forum is perfect for your situation, come back and update us! Sending you hugs and love.
Hi, thanks for the advice. Iāve been referred apparently and she said itās not up to her on who is urgent and itās up to gynae to read over and decide. Iām going to be calling another doctor in the morning and hope for a better outcome and some fast forward help. Iām so worried about how much pain Iām in and the brown discharge. Just feel something isnāt right. Xxx
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