Am I being ignored?

[MelaniePhoebe]

Hi, I’m new here but I’m in desperate need to some guidance.

For a few years now I have suspected I have endometriosis and am just in more and more pain as time goes on. But I feel like I am being ignored by my GP.

For some background; I started my periods when I was 7 and I would get my period every other week very heavy until I was put on the pill around 10/11 years old to sort out the bleeding. I was on this until I was 16/17 then went to the implant for a few years; no issues in this time. Ever since coming off the implant (21) that made my periods mad irregular I’ve just been in ever increasing pain and heavier and heavier bleeding.

It started with very irregular periods; sometimes I’d have 3 a month and felt like I was bleeding all the time; for about 2 years and I thought there was something wrong. But the doctors kept telling me I was fine and that I just needed to take the pill which I didn’t think was the answer. Over time my periods have become more regular but the pain has reached new heights and I am in pain EVERY DAY.

The first time the pain got so bad I thought my appendix was ruptured so I went into the hospital (2 years ago); nothing they could see was wrong but I was still in a lot of pain. I was sent home; and since then the pain has been pretty much an ongoing thing every day. Like dull to sharp period pains every day and then when I’m on my period it’s 100x worse. All around my ovaries, my lower back, lower abdomen and lower hips. It’s like my ovaries are in the most pain and it just radiates the pain out.

I keep going back to the doctor to ask them why I’m in pain every day and they keep turning around and telling me “it’s just painful periods”, sending me for ultrasounds which don’t show a thing but I’m still in pain. They keep saying nothing is wrong but I’m in so much pain sometimes I literally feel insane. On a day to day I have to breathe through the pain; sometimes it makes me grit my teeth or even whince because the pain is so sharp - when I’m on my period it’s just so much worse. I’m literally doubled over, contorting my body into weird shapes to try and relieve some pain, painkillers don’t even touch this pain not even co codamol. Sometimes I just cry because there’s nothing I can do.

Last year I managed to convince a GP to refer me to a gynaecologist so they could see what was wrong even though the doctor kept saying “I don’t see what they could do for you” Hopefully help me was all I was thinking. I had my first appointment in Jan 2021; where I was asked to take the pill that I later found out I can’t take and that I would have a review in 3 months. It’s been 9 months since the first and last time I spoke to the gynaecologist and I can’t get another appointment until Jan 2022; which is just my review.

Fast forward to yesterday; the pain was so much to bare as I was at work. I called NHS 111 who told me to go home and rest; that I shouldn’t be going through this and being in this much pain; they had also booked me an appointment to talk to my GP. I had never been sent home from work for this before either and I felt like such a failure. The 111 woman was so compassionate and really tried to reassure me that hopefully the doctor would help me with the pain at least or try and bring forward my gynaecologist appointment. The doctor called me with no notes of mine or notes from 111; she started telling me that I just have painful periods and I just have to deal with it, and kept trying to tell me to go on the pill which I literally can’t go on because of blood clot risks. We went round and round in circles and she wasn’t listening to a word I was saying. In the end I just broke down in tears and told her not to bother; and I’d just wait for my gynaecologist appointment. She kept saying “oh I know you’re in pain but…” with not really anything to go with it. She didn’t do anything to help me; not even try and move my gynaecologist appointment forward.

I just don’t know what to do at this point. Am I mad? Sometimes the pain is so much I think is this worth it? I feel so helpless

Please help me

[melocoton00]

hi! i am in a similar situation, I would really suggest going private as private GPs will write referral letters for any gynaecologist you want (preferably one who specialises in endometriosis) I finally found one in my city and i got the referral letter after one phone call. Not sure where you’re based but there’s a facebook group that has a link to the gynaecologists that specialise in it around the uk, and people have commented their experiences with said drs. I really hope you consider going private! i know it can be costly, but there’s a company called Benenden health and you can pay monthly for as little as £11, i hope this helps!

[MelaniePhoebe in reply to melocoton00]

Thank you so much, I’ve never heard of that provider before but I’ll definitely have a look! Thank you again✨

[Angellouise]

I am sorry you are going through this hell. My 20 year old daughter is going through the exact thing. We got a new GP who gives her tramodol for the pain but the Gynocologists can’t find out what is wrong. I’m sure it is endometriosis. We live in Canada and I might take her to another province to get help. Can you find a new GP ? Maybe you can get some pain relief and get referred to a Gynocologist for tests. I wish you luck

[MelaniePhoebe in reply to Angellouise]

Hi thank you so much for your response! I’m so sorry your daughter is also going through this; my pains started around 20 too and have just increasing got worse over time.

I’m actually trying to change GPs right now to get a new Doctor to see me as I literally can’t cope with how my doctors is being. I’m on the waiting list for the gynaecologist still but who knows when that appointment will be.

Has she has a laparoscopy? Lots of things I see say they can’t see endometriosis without doing that. Through ultrasounds and even MRI it’s unlikely to be spotted even though they are the sorts of scans they send you for! This is what I’m waiting for now because it’s the only way to know.

Thank you so much for your response again and I hope you guys find someone who will take care of your daughter! Best of luck to you too!xx

[Angellouise in reply to MelaniePhoebe]

Hi yes she has had a lap. When she had her dermoid cyst out the Doctor saw weird tissue but can’t explain it. I think I need a more experienced Doctor that knows about endometriosis for her. Her pain started at 12. Thanks for your response and good luck to you.

[MelaniePhoebe in reply to Angellouise]

I see I see; yeah maybe you could find a specialist in your area. It’s such a shame more doctors don’t have much knowledge about this condition. I’m so sorry she’s had to go through this all and I hope you guys can find some answers soon! Best of luck to you also x

[klc48a]

So sorry to hear this and I am so sad that still we Endo sisters are being ignored despite the numerous campaigns and awareness we are bringing to the public about this painful disease. Today there are lots of FB groups who will offer advice. Doctors at the moment are not available due to pandemic 😞 The way forward is private if you can pay out. Please join group on FB and research Lupron (look at fb group) and other meds. It is not possible to see Endometriosis by scans only Laproscopy op will see this. Lots of hugs. I am now 53 with a frozen pelvis due to Endometriosis.

[MelaniePhoebe in reply to klc48a]

I’m so sorry to hear that you’ve had to go through all that; I also cannot believe with everything being brought to the light that I’m still having to fight so hard. I don’t have Facebook but I’m going to look for similar types on Instagram and see if I can get some more information that way. It’s just sucks as I can’t really afford to go private and I hate that I have to even consider that as an option. I’ve said that to the GP so many times about the scans🤦‍♀️ Thank you so much for your reply I really appreciate it! Makes me super sad to see how long women have been fighting to be heard and are still fighting to this day

[Tinytina15]

Hi, I am going through the exact same situation at the moment. I have been waiting a year for answers. 3 months ago I saw a gynaecologist who I thought was going to look into things but because I refused the pill as I’m trying to conceive he said there’s nothing he can do and referred me onto a fertility specialist which means I could be waiting another 6/7 months in pain while I wait for answers again. I’ve been ignored by my gp who has said it’s just my pcos and ibs playing up at the same time .. I said no something is wrong I can feel it. I now have a chronic anal fissure and hemorrhoids due to being constantly constipated for a year. I have severe stomach pain that was just around my periods but now it can be all month long. My last conversation with a doctor was “ I know your in pain but just wait for your appointment. Because of covid I can’t move your appointment up.” Which I can understand obviously it’s a pandemic but there was no offer of any other kind of help. 111 have also been very good to me this past year by helping me track down medication I needed that my doctor and local pharmacy couldn’t get. 111 have literally been the only people to help me through this past year. Because they told me to go A&E a few months ago the doctor there caught a bowel impaction before it got serious. Where my doctor told me nothing was wrong. It’s so sad we have to go through this. There should be training for doctors to know about the symptoms of endometriosis because I went back and forth for years until one doctor mentioned endometriosis to me.

The pain has been so bad I have been suicidal and been put on antidepressants as I just couldn’t take the pain and how it was affecting my life. They have helped but what would really help is some answers. It’s the not knowing that makes everything worse. I think it would be worth ringing back and speaking to a different doctor, and possibly a female doctor if you haven’t already as ive noticed they have a little more sympathy and understand the situation a little more.

I hope you get some answers soon!xx

[MelaniePhoebe in reply to Tinytina15]

Hi thank you so much for your response!I’m so sorry to hear that you’re going through the same thing; it’s absolutely nuts that this many women are suffering and nothing is being done about it.

Thank you so much for also sharing your story; the lack of knowledge from GPs is actually astounding but I’m a strong believer also that if they don’t know then they should be referring us to someone who has better knowledge then them instead of just pushing us to the side all the time. I always think they say “oh it can’t be that” but how to they know unless they do the proper tests? Speaking with my GP the other day I said at least 7 times I didn’t want to go back on the pill as it didn’t help before and still the next day I received a text saying my pill prescription is ready to collect 🤦‍♀️ They honestly just don’t listen to a word I say.

I absolutely know how you feel on the suicidal front. I suffer with mental health issues also and sometimes I think this is also why I am being ignored. I have been suicidal because of the pain too; even yesterday I was thinking “is it worth carrying on when no one will help me?” I feel very helpless and powerless and I just don’t have the fight in me to keep fighting right now. Like yourself; I just want to know what’s going on. We wouldn’t be coming back over and over for nothing and I don’t think GPs realise that.

Unfortunately I’ve spoken to all female GPs during this and only 2 of them (who are now both retired) were even remotely helpful. 111 have been the best throughout this whole thing; super compassionate and understanding 11/10 to them!

I hope you also get some answers too lovely; we shouldn’t have to be suffering like this it isn’t fair! Big love to you always xx