Early stages

[Chloes123]

Hi,

I've been suffering with bad period pains and pains at different points in my cycle for around two years now. I have been point on several pills which have resulted in pains and bleeding becoming worse, these were all combined pills. I have had scans at the hospital and also swabs, no infections or cysts were ever found. I was told to stay off any birth control pills for a few months to let my body go back to its natural state. I have done that and again the pin has progressively got worse. Two weeks ago I have been back to the doctor who has put me on the mini pill. My doctor has said I have showed many of the symptoms of endometriosis and that she is treating it as a gynaecology problem.

I have been in constant pain since last Monday and was advised by the doctor to take codeine and paracetamol for the pain. I am not on my period and last week was around ovulation time, the pain is predominantly in my right side, it feels like my ovary/ hip/ pelvis has been ripped out and my back also hurts. Codeine is helping but the pain is never constantly gone, it's hurting to have sex with my partner and my mood swings are becoming out of control. I have never experienced tiredness like I have now and I am struggling both to get up in the morning and make it through a day without any pain.

I'm struggling to find something to manage the pains although hot water bottles and baths help but this isn't practical at work. I'm just looking for advice and opinions on what to do next really and how people have gone about being diagnosed.

[Alessia]

Hello there dear. How are you doing? I hope that things are fine at your end. I also wish that you had a perfect day. I am terrible sorry to hear that you are in pain. Are the drugs helping you. After I had my surgery a while ago, nothing could help me with the pain. I sincerely hope that is not the case with you! I know what being in immense pain feels like!

Have you thought of changing doctors? Maybe going to another clinic. A fertility specialist could do the trick too. However the best choice would be a gynecologist. Since you mentioned that your doctor is treating your case as a gyneological issue. I hope things get sorted out soon. God bless you dear. May this pass as soon as possible!

[Chloes123 in reply to Alessia]

Thank you! I'm struggling with pain and generally feeling drained and tired. I have tried to get a doctors appointment with the same doctor as I have had issues in the past with doctors passing it off as being normal but I have not been able to get one. Codeine helps but I have get drowsy at times which is difficult with work and driving. I was previously under the gynaecology unit at the hospital but they did not investigate endometriosis and the consultant discharged me in April last year and that was who said to come off pills for a few months but I have found myself in the same position, if not worse. Is there any pain managing methods you recommend or anything I can do to try and ease them?

[Alessia in reply to Chloes123]

You are welcomed my friend. It is a great thing that you are trying dear. Things are always complicated and hard. It is not your fault thats how it is for everyone. I am really sorry that this is happening but there is nothing that you can do about. What you are experiencing is one of the many side effect of opiod consumption! It's probably very bothersome but keep in mind you'll be fine.

I cannot recommend of anything right now. In my time I didn't suffer from endo. i had a surgery where they removed my uterus. however what I did to manage pain back than was eat pills like candy. I used to pop a whole bottle in a day. Although my doctor advised me not to eat more than 3 per day. I nearly became addicted... You shouldn't do that... Maybe take one extra pill or ask your doctor to give something stronger. However don't make the mistake I made... WIsh you luck! I am sorry that I cannot help you!

[Littlebirdy34]

Hello, just wanted to say that I came off the pill middle of August and went downhill as the weeks went by. Pain became unbearable and I even went to A&E as I didn't know what was going on.

I was put back on the pill middle of Dec and it's taken a little while but I have started to feel human again. I do however seem to get some pain around when I'm due on and would be ovulating (currently taking combined pill back to back 3 monthly).

I can only say push forward with the doctor and gynaecologist and make sure you have some good pain relief.

Lots of luck x

[Chloes123 in reply to Littlebirdy34]

Thank you for your reply!

My doctor is quite understanding and has said the next one to try would be the injection. The pains and fatigue is progressively getting worse every day. This has been ongoing for two ish years trying different pills and no pills at all. I take mefanamic acid when pain is bad/ when I am on my period. I have read up a lot on endo and that diagnosis can take a while. I'm just trying to look for ways to help in the meantime as I've not had a month since I can remember where I've not had pain.

Thank you again for your reply, I am hoping this pill will have some effect

[Samid76]

Sorry you are struggling I would agree with littlebirdy34 keep on at your doctor and ask for a referral to a gynaecologist I’ve had to wait months for them to refer me when they should have done it from the start I am now waiting to get an appointment through on the ridiculous new nhs booking system an all the while being in complete agony they can even see my endometriosis in my belly button and it doesn’t seem to make them help you any quicker I haven’t yet found any pain relief that helps and am dreading next month as mine gets worse towards the end of my period it usually only lasts about a week with the pain but this month my pain has been constant and still doesn’t seem to be going anywhere my belly button has swollen up like a purple balloon so god knows what’s going to happen with my next period I have a feeling I’ll be taking myself to the hospital 😭 I hope you manage to get somewhere with your doctors

[Chloes123 in reply to Samid76]

I've got an appointment tomorrow with my doctor but I've taken today off work which is something I never do. The pain seems to get worse every day as well as the fatigue. I think I will be due on next week so I'm the same with dreading that bit too! I'm unsure as to whether the pill has made symptoms worse, have you found any hormone treatment to be effective? Hope your pain eases off and you get an appointment with the gynaecologist as soon as possible thanks for your help x

[Littlebirdy34]

So difficult isnt it because what works for one person doesn't the next.

I'm still yet to be diagnosed and currently waiting for a lap but I've been extremely lucky with doctors and consultants as I first went to the doctors about it 8 weeks ago.

From what I read some ladies are suffering for years.

Fingers crossed you start to have more relief as time goes on x

[Samid76 in reply to Littlebirdy34]

Ahh that’s amazing at least they seem to be listening to you, to be fair my doctor has been ok and based on my family history hasn’t tried to suggest I could have anything else it’s unfortunately in the hands of the nhs system now to give me a consultant appt and then get a date for a laparoscopy which I’m hoping won’t be too far away I didnt have any problems at all until we decided to try for another baby which is really frustrating 😞