Finally got a diagnosis of Endometriosis today

[Mindfullness4791]

I've been on such a journey with my pelvic pain. I'm 50 and I had a hysterectomy 4 months ago for fibroids. A laparoscopy ruled out Endo last year. I was pain free for the first time in months. I started hrt and my original pains 6 weeks ago came back with a vengeance just like they did last year when I took it with Prostap.The consultant said it is obvious that I have Endometriosis but they just can't locate it. The plan is for me go on Tibilone and if that doesn't work sequential hrt.

I can't believe I'm here, when 4 months ago I thought the hysterectomy would cure my pain 😢

[Endosufferer1]

Well, not if you're taking hrt!😅 And ovaries need to be removed, too.

[Mindfullness4791 in reply to Endosufferer1]

??

[bearbellabailey]

my first keyhole surgery for endo when I was 19 now 27 they found nothing and only got diagnosed through a biopsy that confirmed it ,you probably do have it but it's hiding like mine did keep pushing for it the treatment for endometriosis sucks and its a long road but don't give up xx

[Mindfullness4791 in reply to bearbellabailey]

Thank you. I've had painful periods my whole life but got fobbed off.I hope you are having treatment to help 🙏 xx

[Ova104 in reply to Mindfullness4791]

Me too only diagnosed at 45. Years of rubbish doctors never referring me! Nearly made out it was in my head.

[Mindfullness4791 in reply to Ova104]

I'm sorry to hear this. So many of us have been failed. I also thought it must be in my head. Even though I've been on morphine with the pain! X

[Ova104 in reply to Mindfullness4791]

My whole life and people saying you just have bad periods. I fainted from 14. If I didn’t get painkillers on time too 2.5 hours of sweating and lying down until pain relief. Passing out. Docs saying just bad period pain. Ended up with peptic ulcer taking Nurofen for years and sensitive stomach. Going up to sick bays in work etc over the years. Getting wet with sweat and going black was frequent.

[bearbellabailey in reply to Ova104]

yes the bad period quote even recently I was told endo doesn't cause pain and it was just stress and take ibuprofen the specialist was not happy with that at all and gave me really good advice she said dont go to the ones saying no or the ones who don't understand she said only go to the ones you know you will benefit from she said most people have no understanding of endometriosis nor do they want to learn stick to the ones that help you not the ones that don't I always thought I was going to be with bad doctors who didn't care till this specialist and its really changed my whole view most are bad but find the woman's ward at your local hospital they will be the ones to understand the most get a referral to the woman's day ward get your help there not froma doctor who says no xx

[Ova104 in reply to bearbellabailey]

unfortunately that has been my experience most are bad and now I am facing what is surgery and I am still going can these be trusted with their varying opinions..No faith. Women on this have been great and the helpers of the website. I am back on 24th of July for another scan... other consultant would not do repeated scans every 3 months just refused.. Found one who was willing to 3 monthly checks..

[Mindfullness4791 in reply to Ova104]

I'm so sorry. It's outrageous how women are meant to put up with such significant pain I thought it must all be in my head xx

[bearbellabailey in reply to Mindfullness4791]

don't ever let them get to you that you start thinking your crazy I've been sectioned called a drug seeker told it's in my head and even logged on my notes the hospital even stopped seeing me when going there with bad pains was told I was faking it discharged with nothing but a mental health referral I got to the point I became my own doctor all health issues now I do my own research and take it to the doctor myself if they say no you don't have this say how do you know I don't have it when you are refusing to do the 1 test that will show if I have it or not and if nothing shows that's on the nhs for not looking in all places endometriosis can grow anywhere in the body put your foot down don't take no for a answer fight back but don't give up xx

[bearbellabailey in reply to Ova104]

wow 45 I'm so sorry that is awful I'm glad you got the diagnosis eventually but that is bad I'm sorry it took them so long to find it xx

[Ova104 in reply to bearbellabailey]

found when there was a complex cyst but no one bothered before this and now facing surgery.. and god knows what else. Just hoping not malignant... one consultant says won't know until ovary fallopian tube and mass taken and other saying doesn't think it is.... doctors differ patients die. No faith in medical profession I take what they say with pinch of salt.

[bearbellabailey in reply to Ova104]

I'm so sorry ot has got to this point and sorry another surgery will be needed it's awful isn't it they don't care until its too bad I hope it's not malignant but I can understand why you wouldn't trust what the doctors say have they given you any time frame for surgery are they getting other specialist involved too xx

[Ova104 in reply to bearbellabailey]

i face another tv ultrasound on the 24th of July, it was growing marginally 7.4cm at moment

[bearbellabailey in reply to Mindfullness4791]

bless you it's really horrible even when I had my last surgery I woke up and was told ot wasn't endometriosis they was positive but they took a biopsy anyway I got a letter through confirming endometriosis my doctor was certain they didn't even look because they was already adamant I didn't have it but now have symptoms of bowel endometriosis and very severe too you have to keep fighting tell them you want it logged that they have refused a lap and why they have refused it so you can then seek further advice this helped me alot doctors don't like writing fown that they have refused because periods are suppose to be painful it's normal get them to log down their every word it helps please don't give up I fought since I was 14 being diagnosed with pcos to now being told I never had it xx

[Ova104 in reply to Mindfullness4791]

spent all my life dealing with period pain unfortunately now I have what feels like perm period pain low level at least (pelvic pain) don't know if it is the endo or the large cyst....and no one can tell me or wants to call it. They will take out the cyst probably but that may not resolve it...I have as much faith in the medical profession now....they couldn't diagnose a mouse...sorry sum total of my experience.. I am glad some of you have had a good experience.. I take charge now and do my own research pier reviewed etc...don't rely on one opinion there are no experts... human error, lack of experience and the rest...

[Sunset-lady]

Hi lovely I'm assuming they took your ovaries out as part of the hysterectomy. I recommend you look into progesterone therapy. Look up Balancing Hormones on Facebook - woman called Gemma Banks runs it. Read everything xx good luck xxx

[Mindfullness4791]

Hiya, yes they did take my ovaries and fallopian tubes too. I will have a look. Thanks so much xxx

[VickyBM]

I really sympathise with you. I’m so sorry to hear this.

I had hysterectomy and ovary removal a year ago. I was put on tibolone for 6 months due to endometriosis being left behind. Surgical menopause was affecting my mental health and so I was transferred on to combined HRT. Estrogen dose gradually increased and… so did the pain. Back to square one as endo is clearly flaring / growing.

Just been told I have to have surgery again to try and remove it. Back to an 18-month waiting list

I’m now left back on painkillers again awaiting another surgery trying to manage severe pain and terrible surgical menopause symptom. Totally gutted.

I am so sorry to hear you are in the same boat. I’m thinking of you and hope you get some relief soon.

Sending you lots of love and healing wishes.

[Mindfullness4791 in reply to VickyBM]

I am so sorry to hear what you have been through. You sound so similar to me.I found the surgical menopause brutal too

So, are you on any hrt at all?

It's just not good enough that you have to wait that long, when you have been through so much already.

I'm seeing a Harley Street specialist next week for an ultrasound scan. I just don't trust the NHS anymore. I'm on minimum wage, so finding £500 is difficult but I feel I have no choice.

Thinking of you. Sending lots of love and strength 🤗