Feeling terrible everyday

[Vonniexx17]

morning this is my first post. I as told awhile ago I have endometriosis but since then my doctors don't seem interested. Usually I am told to take pain medication and rest. I was told awhile ago my options are to have a hysterectomy but I am 33 with no children. I recently got married (before the everything was shut down) and now my mum keeps going on about having kids she thinks that if I have a baby everything will all of a sudden be better - I am not even sure I want a baby. I don't really feel I have anyone to talk to. Sorry for the long rant 😔

[Moon_maiden]

Have you seen a gynaecologist? A good one won’t suggest hysterectomy before anything else, especially if you want children.

Pain everyday isn't easy to deal with, I resorted to morphine when I went to bed last night.

If you haven’t beef referred, look at the NICE guidelines, a great bit of info to go through with GP.

I haven’t had children sorry I cant help with suggestions on this.

Your GP does have a duty of care and should help with pain management

Hope you get sorted soon

[Vonniexx17 in reply to Moon_maiden]

Hi thanks for replying. I went to a gynecologist at first but he told me that a hysterectomy was my best option.

My gp just gives me prescriptions on and off for pain killers. I was sent to physio but the women there asked why I was there.

I get the feeling from the doctors I am just making up the pain. I get very anxious about going to the doctors.

[Moon_maiden in reply to Vonniexx17]

I know what you mean about going to GP’s, feel the same most of the time. This year they seem to be a bit better since diagnosis and op, last year was awful. I don’t get why though.

Speak to GP, have notes, alternatively fill in the online consultation form, so much easier to explain. I do this most of the time. That and it’s in black and white on your record, not relying on doctor notes.

Depending on the experience of your gynaecologist, maybe a second opinion would be a good idea.

The consultant who I’ve seen and did lap is reluctant to do further op, on Zoladex to see if that will help. I’m past for having children.

[Vonniexx17 in reply to Moon_maiden]

Thank you for your reply I will look into your suggestions. Its nice of you to take time out to reply. I try to talk to friends and family and they have no clue what I am going on about.

[Moon_maiden in reply to Vonniexx17]

The forum has really helped. I can’t say I’ve had years of knowing experience of diagnosis, probably had it years, but managed until last year.

I know it’s hard for others to understand, try and give them links or printed info to look at, may help. I think people understand appendicitis and associated pain, maybe something that includes how it often gets mixed.

Even I keep wondering if there’s something else going on, very surreal condition.

If you want to private chat please do.

[xxPxx in reply to Vonniexx17]

A gynecologist should never give you that as only option at your age! My pain was so bad at that age I begged for hysterectomy and was straight out refused and I'm so glad. I'm 36 now and come to terms that I won't have kids but I was put into medical menopause for 2 yrs and really do not want those feelings back until totally necessary. Please do not think pregnancy will cure you and if you aren't ready for a kid don't do it. I felt time was running out and actively tried but it didn't happen and I'm now glad as realised I panicked and it wasn't right. See your gp and ask for referral to another gynecologist. I had to get 2nd opinion to get my surgeries. I now have only one ovary and fallopian tube and still in pain but can live with it. You are not being a problem patient by asking as it was best thing I did as first gynecologist recommend buscopan!! I was in tears saying I'd kill myself with pain and was told that so got rid and got a great gynecologist. Get onto gp asap as everything will take so much longer due to pressure on nhs just now. I am waiting on one last op to deal with scar tissue etc but know I will now wait a lot longer. Do not rush into anything other than seeing gp and getting someone who listens to you and your wishes. All the very best of luck as my journey took 17 yrs just to diagnosis never mind treatment but there are soany other options and hysterectomy doesn't guarantee no pain. You will get through this with the right advice. Take care xx

[Vonniexx17 in reply to xxPxx]

Thank you very much so kind of you to reply. I sometimes feel like If I did get the hysterectomy then I wouldn't have the pressure from my mum to have a child but I know i won't go through with it. I will go to the gp and asked to see a different gynecologist thank you x

[Linley]

Well your mum must be from the same school as mine, she had terrible period probs before Endo was known about, and hey presto after she had me all her problems went!

But that said things are very much different, getting pregnant is not a good idea if you are not sure at this stage if you want children . Agree with Moon_maiden get a phone consultation with your GP he has a duty of care to get your pain under control. Keep safe

[Vonniexx17 in reply to Linley]

Yeah i think that's the same situation as me. My mum had problems and had kids and was fine.

I will speak with the gp and see if I can get a second opinion and more helpful pain management.

Thank you

[Clarice123]

I agree with moon-maiden re the gynaecologist, but you need someone who specialises in endometriosis. My daughters endometriosis gynaecologist is a member of BSGE. They have a website bsge.org.uk, you can see where their endometriosis centres are, hopefully there is one close by to you. Then you can ask your G.P for a referral via ebook.

My daughters case is complex as she also has a unicornuate uterus that has caused problems. I’ve had endometriosis myself many moons ago, it was caught early and only in one location. I was given Danazol for 9 months, which they don’t seem to use anymore, it suppressed my periods and also had testosterone in it, it was wonderful. After being off it for 4 months I became pregnant with my daughter. Obviously I had no pain during pregnancy as well, to my surprise and delight it never came back, but there’s no guarantee.

My daughters endometriosis was all over the place, plus part of the unicornuate uterus issue had caused constant bleeding into her pelvis with nowhere to go. She has had the Zoladex injection, which eased the pain, but the side effects were horrendous for her. She has had the endometriosis removed 3 times in 3 years. They also tried a coil, but because she only has half a uterus it was too uncomfortable, moved, and has caused awful acne.

We had battled for 10 years to get an answer for her, at 14 they told her she was too young for endometriosis, even though I told them I’d had it and recognised the pain patterns. But some consultants have the God complex and know best because they’re the expert.

As far as I’m aware you need 2 consultants to agree to a hysterectomy, this is what we’ve been told, especially as she hasn’t had children. There is no easy answer, in my daughters case she has had enough of the pain. There is also a 60% chance that she could miscarry right up to the third trimester, which would be horrific.

There are a lot of options before a hysterectomy, my daughters gynaecologist has tried them all, bless him. You could try the Mirena coil, that was the first treatment, if that doesn’t work there’s Zoladex.

I searched out our bsge consultant as I’d had enough of being fobbed off. I paid for a private consultantation. Luckily he did NHS appointments as well and transferred us onto this list for the procedures as we had no insurance. I’m glad he did, it would have cost approx £16000 so far 🥴, and a hysterectomy is £6000 if it’s required. It makes you realise just how good the NHS is, we would be in debt by now if it was like the USA.

Just keep on at the G.P, it’s their duty to help you and not fob you off. It’s a hideous condition. I know it’s not easy when you feel so ill, I took on the battle for my daughter, I was very forceful and read everything I could so I’d be able to converse with the Drs in their language. She even said she wouldn’t have been able to do it herself, but when I was watching my daughter suffer like she was the momma lion came out. I was like a mother possessed, but it was exhausting.

I wish you luck, don’t give in. If you are near or can get to Sheffield I can give you the name of our bsge surgeon/consultant. Same as moon-maiden, if you want a private chat feel free. Take care and stay safe.

[Vonniexx17 in reply to Clarice123]

thank you very much. Its nice that you were there for your daughter. Thank you for your advice I will have a look on the website you shared many thanks x