Newly diagnosed and confused :(

[L_White]

Hi, I'm a 35 year old woman newbto this page who started to suffer from extremely heavy periods and pain going to the toilet after having the implanon implant removed (I don't know if this is connected, but still...) I was put on iron tablets as I was loosing so much blood every month it was making me anaemicand lose my hair.

After being sent for ultra scans, internals and X-rays my doctor mentioned to me very off- hand that she believes that I have endometriosis but I haven't had a laparoscopy to confirm this. I had a mirena coil inserted to help with my symptoms and it's certainly helped with the heavy bleeding but my pains are still coming every month and in fact seem to be getting worse. Having a wee is very painful for a few days a month and opening my bowels is so bad I have to use a laxative (so sorry for the graphic information!)

I'm feeling so sad and confused, I don't know if this is the best that it gets? Painkillers don't help me and my doctor was so dismissive- it seems that the coil was the answer. I'm starting to doubt if she was right, or even if I have endometriosis! I'm going to go back next week to see her but in the meantime I was hoping someone may have some advice for me?

So sorry for the long post 😞

[Rachievet83]

I am just recovering from a lap which diagnosed endo. I have suffered for YEARS with 'IBS' and been fobbed off by various doctors and the most important thing I can say to you is stand up for yourself. The gold standard for endo diagnosis is laparoscopy so if your doc thinks that's what you have then she should refer you. I finally saw an amazing doc-she did bloods first and sent me for an ultrasound to rule out other issues then was able to refer me to my local endo clinic. They found during the lap that My bladder, uterus and rectum were stuck together, despite a 'normal' internal pelvic exam, and my colon was stuck to my body wall, which I assume explains a lot of my symptoms! I wish I had pushed for answers sooner as it has had quite an affect on my marriage, but at least now I have an answer I can manage it. I really hope you get answers for yourself 😊

[L_White in reply to Rachievet83]

Thank you so much for your reply! I'm naturally a deferential person and also highly anxious so find it very hard to be assertive and tend to not push the doctors. I'll try to write everything down this time - hopefully she'll listen.

I'm so blessed to have two young children and a job I love in a school but I'm finding the pain is affecting these areas of my life now, I really want to get answers and some help to manage the pain.

I really appreciated the kind bed understanding response- thank you x

[Rachievet83 in reply to L_White]

I totally understand as I too find it hard to be assertive and I was fortunate enough to finally see an understanding doc. Despite suffering since I was about 18 things have worsened in the last couple of years since coming off the pill to try and get pregnant, and despite no one wanting to commit to answers, I am sure I had a very early miscarriage a few months ago which drastically worsened my symptoms and I have not had a pain free day since September . I actually started to feel like it was all in my head and I was just being weak, so getting a diagnosis has actually made me feel more positive. I'm not usually one for 'forums' but sometimes it helps to talk to someone who has experienced the same things, and it's encouraging to hear people's stories. If you go to endometriosis-uk.org/visiti... it suggests questions to ask. Good luck! Xx

[Sez73]

An off hand doctor who takes a stab in the dark "believing" you "may" have endometriosis just sums up what us end girls have to fight against all the time. This is her inadequacy as a doctor, so don't have that treatment in anyway undermine your self assertiveness, this is your body and you care enough to try and understand what on earth is going wrong in it. Anyone who dismisses that is not worth your attention or time. Ultrasounds/internal exams/x-rays is not the gold standard for diagnosis. You must have a laparoscopy. The fact that you have pain peeing could also point to, like in my experience, issues with your ureters (tubes running from kidneys to bladder) these are quote often implicated in damage from endo and more often on the left hand side. Never accept this is the best things can get for you. I got diagnosed 25 years+ too late and my biggest regret was just accepting what the GP said and thinking all the pain must be in my head. If I could turn back time, I would have fought and fought till I was exhausted from it. After diagnosis and finally feeling vindicated, I sought an excellent surgeon who not only excels in his field but is a pioneer in his treatment of extremely serious cases of endo, more often involving complications with the bowel/ureters etc. Only now I can finally get some answers and the relief is huge. While I'll never be completely free of pain (as I have adenomyosis too which is endo like within the walls of the uterus and incurable) me fighting for answers has brought me some results.

NEVER doubt yourself and your gut instinct, fight to be heard and keep fighting until you're heard.

My biggest piece of advice moving forward from here...get yourself another doctor, fast and find your voice as there is a large proportion of the medical professional who do not understand this illness fully and therefore don't act accordingly.

Good Luck with everything, I can understand your frustrations and sadness and sympathise greatly, I've had a very very long road of this and know how hard it can be. Sx

[sara124]

My doctor was also dismissive of me so youre not alone. I am 22 but I struggle with the same symptoms as you but I have yet to receive a proper diagnosis. I would suggest that you request a laproscopy. At 35, you're doc should have already agreed to it esp. With your severity of symptoms. Feel better.

[Lou7707]

Hi L White

I’m sorry to hear about your experience.

If you need someone to talk to, we have a helpline service which is run by volunteers who have experience of endometriosis.

endometriosis-uk.org/suppor...

Good luck when you see the doctor

Louise

Endometriosis UK

[Starry]

I suggest you get a new gp and ask them to refer you to a specialist bsge endo centre where they will know better how to treat you.

bsge.org.uk/centre/

[L_White]

Thank you so much, all of you for your kind words and advice.

I went to see my doctor again today armed with all of the advice and information I've been given, and while she's still insistent it's endometriosis given my symptoms I have now been referred to the gynaecology department for a Laparoscopy (awful spelling there!) which is great news.

so thank you, all of you for giving me the tools the bravery to stand up for myself xx