Help! ​Do I​ have Endo? The doctor says no but....

[CaraRose]

Hello,

Its taken me 20 years to get to this point. I'm 33 years old, never had sex and obviously no children. Since the age of 13, I have had painful periods. Seen my Doctor year after year about pain treatment. Always been given painkillers. Never taken contraception of any kind. I have severe pain each month and sometimes I throw up or faint. It lasts about a day and a half. Sometimes I get a sharp ache in my pelvis after or before my period but not all times. (Can be wind some months!) I've had TWO separate ultrasounds and both came back "clear". However, seeing a news story, I looked up my symptoms and got into a terrible state. I didn't know of this laparoscopy that is more conclusive than the ultrasound and I feel like I've been suffering so long and my doctor is fobbing me off. Then I read all sorts about how it having endo increases risks of cancer and infertility and I just burst into tears. I just got engaged this year and want to have children. (Waiting until marriage) I have made an appointment with my Doctor. I just wondered if there are any other symptoms that I should have that are obvious and if anyone had trouble booking a laparoscopy with their Doctor?

This website has helped a lot. But I'm still in a state of panic and anxiety.

If anyone could help or give any advice I would be grateful.

Peace.

Cara

[AllWeNeedIsluv]

Tell your doctor your sick of being fobbed, off and you want a, referral to a gynae. But I'd, go private if I was you find an endo specialist tell them your worries don't get fobbed of with birth control and get a, lap by an expert in the field to see if you have endo or not. Spotting before your periods in between periods brown discharge type before periods nausea back pain bowel problems long periods irregular cycles are all symptoms you can have them all and no endo or you, can, have no symptoms, and sill no endo. It's, very complex but if you want to know once and for all. I'd go private if you can. Your gp would refer you to normal gynae, and no doubt normal gynae will fob you off with hormones unless your ttc. Sounds, crazy but it's seems this is what happens time and time, again. Hope this helps 💗🤗😘

[NDE1987]

Hi cara, I feel your pain as I was ignored from my male doctor for ages until I went back and saw a female nurse.and after another scan and laparoscopy it was confirmed I had endromesosis. Like you I didn't have sex until marriage and didn't take any type of birth control before. Even after marriage as we wanted a baby straight away. But it's been 3 years and we are still trying for a baby. I have had two failed ivf attempts and am currently having more tests done. But please don't let this put you down because there are loads of women who have endometriosis and go on to have kids naturally. I wish you all the best and if you want to ask any questions please feel free to xx

[hellybaybee]

Well an ultrasound won't show endometriosis. Ask for a referral to a gynaecologist (make sure it's in a bsge centre). They xant refuse a referral... I was in the same position, finally put on the waiting list after about 13 years and was pushed back so went private through work insurance.... oh and I did have endometriosis... all up my right side and between my bowel and uterus.

[kyla78]

Hi Cars, sorry to hear this. A laparoscopy is the only way to diagnose endometriosis

[MMary-Moderator]

Hi CaraRose,

I am sorry to hear you have been suffering.

Here are some links to our website that you might find useful in getting a further understanding of endometriosis and help with getting a diagnosis.

endometriosis-uk.org/inform...

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

All the best, M Mary, Endometriosis UK

[CaraRose]

Thanks to all here for your kind words and advice.♥️ I have an appointment with the Docs tomorrow. I'm hoping I can get a referral for a lap. Will update soon on what happens. I hope he doesn't fob me off!

[Emma5397]

The only you can be diagnosed with endometriosis is by having a laparoscopy, so they can't tell you that you haven't got it just by looking at you normally...it sounds like you have it tbh...I was told I keep getting bladder and kidney infections for 8/9years...turns out I never had one and it was endo all along. Don't give up! Keep pushing. This is your body and you know something isn't right. Just cause their doctors don't mean there right and you have to go along with it. Speak up and keep pushing. Tell them you want a laparoscopy as that's the only way to be diagnosed with endo.

I hope everything goes okay and I hope you get the results you need!

Emma xx

[CaraRose in reply to Emma5397]

Thanks Emma 🙏🏻 I see that you have been signed off work for 8 weeks before, are you still unable to work? Is your pain constant? Xx

[Emma5397 in reply to CaraRose]

Iv been signed off work since April of last year, I'm still unable to work, due to pain, not sleep and it used to effect my job with the time off and most things I could do, so I'm still signed off..are you still working

[CaraRose in reply to Emma5397]

I am but find it so hard...my boss doesn't understand so I have to force myself into work sometimes and end up fainting and they finally let me go home. Do you just get pain in your time of month? Or does it affect you all month like? Xx

[Emma5397 in reply to CaraRose]

Just go to your gp and ask to be signed off, even if it's a week or so, so you can rest up. If you still feel no better then keep going back and be signed off again. There's nothing your boss can do if your signed off. And I'm in pain all the time, nigh and day but the pain gets worse on my period xx

[CaraRose in reply to Emma5397]

Christ how do you cope with it all the time? Have you had any treatment? I am considering speaking seriously to my boss with a doctors note. I hope it gets better for you. You got any kids? Xx

[Emma5397 in reply to CaraRose]

Iv been on the pill, had a coil fitted witch didn't work for me so had it out and now back on the pill. I had a laparoscopy in December and I need another one soon. I don't have any kids yet but I do want to eventually

[CaraRose]

UPDATE:

Went to see doctor today and broke down into tears telling him how fed up I am of the pain. He looked at my notes and said I'm being currently treated for primary dysmenorrhea and asked me lots of questions about the pain and sickness. Then he examined my abdomen and recommended an internal examination with a female and spoke to me about endo. He said it's "quite rare" and my I don't have enough symptoms to lead him to believe I have it??? He's said the scans wouldn't show up so after I had the internal examination we will go from there. My partner was with me and asked about the keyhole surgery to see but he said we will take it step. So I don't know how I feel really. What you guys think? I've got to stop obsessing over this as it's giving me depression 😔😔😔

[Tia1991]

Hi cara your Dr isn't right for you for what you are going through. I saw a different dr as mine wasnt available and he told me that you could have endo all over but have little or no pain and have small bits of endo and be in horrendous pain. One woman went to be sterilized and they found she was riddled with endo but she had no symptoms or pain so it doesnt matter how much or little pain you have you need to get it sorted. My Dr was exactly the same and he only referred me after I went to the different Drs in the surgery and he told him that he would refer me to a higher gynea the other Dr wouldn't overrule my gp as he is a gynea but he did listen eventually I think he just got bored of seeing me all the time. I feel for you I've had this for 12 years been fobbed off had the pills and coils none of which worked I am now on the zoladex injection which for the 1st 3 months worked they decided to change it to prostap injection which didn't help I'm now on the zoladex injection again and it doesn't seem to be working I'm in agony all day everyday with nothing to help me my Dr again won't refer me he has gave me morphine for the pain which isn't ideal but its the strongest what he can give me. Change your doctor that's what I will be doing soon. Didn't want to as I don't want to go back to step one 12 years ago try this pill and this coil but you need to do what is best for you. Hope you get through to a Dr that will listen to you soon. If you have different doctors in your surgery ask to see one of them they might help you more than what your Dr is.

Take care

Tia xx

[CaraRose]

UPDATE:

Hi all! Thank you for your kind word and messages. So.... I've been to see the gynae, and he as given me Cerrazette, and said its too risky to perform the laparoscopy because of infection? AND then he had the cheek to say "just have a baby"- I really didn't expect that from an "expert in the field"???? UGH. So here I am, sat here staring at these cerazette pills scared outta my mind about taking them. I hear they don't always work and do nothing for the pain, and worst of all that they cause depression. So I'm no further forward here. I've been looking into Tumeric, but I dunno, I'm just desperate now. I'm due on my period tomorrow or Saturday. Should I take the Cerazette? Or ask for a second opinion? IT really is shit out there for women getting proper treatment.