Endometriosis UK
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Need to chat, possible endo?

Have suffered badly with periods and pain since I had my daughter 3 years ago. Have the implant nexplanon and it was awesome for over 10 months. For the last 16 weeks I have bled non-stop very heavily with no clotting, went to docs, had bloods done, they were fine, clotting screen came back normal, was put on the pill for 9 weeks and it was awful, was flooding twice a day, pain was out of this world but I carried on. so went to docs last Monday, Wednesday had a call from the hospital, they want me in this Thursday to see the gynae however, am still in pain daily but the bleeding has stopped. Any ideas? I have 3 children so have no trouble fertility-wise but the pain and bleeding is getting worse and no amount of birth control works anymore yet I need it because I don't want any more children. Pain is a 9 on a 1-10 scale, I have daily low back pain, twisting ovaries and tender abdomen and pelvic pain, feel like someone has hacked away at me in there. I really don't want the coil because I also have my cervical ectropian back after having cryotherapy 2 years ago. Im seeing the gynae on Thursday but I have no idea what to ask or how to explain how bad things are, please give me some ideas thank you x

1 Reply

You will need to have scans first and foremost if for no other reason than to rule out all the other things that cause heavy eratic periods.

Fibroids being one the most common.

Ovarian cysts can cause constant pains...especially if the are leaking and definitely when they explode.

Endo lesions which are flat and on the surface of tissues and organs will not show up on ultrasounds unless they are particularly thick.

But if you have endometriomas (blood filled cysts) they will show up.

Just because you have had kids has no bearing at all on whether you have endo.

ndo can cause infertility but only when it is groing on or near the ovaries and fallopian tubes. As the wretched stuff can grow absolutely anywhere else it wants to, you could still have raging endo everywhjere else but clear tubes and ovaries and be well able to conceive.

There is another disease.....evry similar to endo, but classified differently because it is endo inside muscle tissue rather on the surfaces. This can grow inside the walls or the womb and can show up on scans because it bleeds and the bleeding is trapped in the muscle and that gives constant pains. The disease is called adenomyoisis.

You can have adeno without having endo, and you can have endo without adeno, or in some rare cases both. But that is not very common.

The website for adeno info is


and your description of symptoms could well turn out to be adeno rather than endo.

Which if that is the case is easily rectified with a hysterectomy to remove the adeno entirely. Unlike endo, the adeno once gone is gone for good.

Another option you might want to look in to for trying to stop the heavy gushers, is MEA or microwave endometrial ablation. it is new on the NHS. This involves cooking the lining of the womb at high temperature to hopefully stop the lining from growing each month and thereby shedding each month. I haven't heard anyone report it was entirely succesful in stopping all bleeding but it certainly will be able to stop quite a bit of the uterus from bleeding.

Another treatment that is often given for as yet undiagnosed gynae pains and heavy bleeding is GnRH hormone therapy. These are cancer drugs and very strong with lots of side effects and not be taken without first researching thoroughly and discussing with hubby and the grandparents, especially as you have young kids in your care. The drugs can have you bed bound for days at a time. they can also make a huge unwelcome difference to your anger moods and to depression. These are caused by the drug, and this is where you do need to be aware of what might happen and have contingency plans in place for the care of your kids, if you cannot drive because vision is blurred, if you feel in too much pain to prepare meals or collect them from school and that sort of practical side of life. Think chemo..and that is what you are preparing the family for.

So be cautious about those. I am not saying don't take the drugs, but before you do, make sure you are aware what can happen and have plans in place for when they do happen.

something is definitely wrong, write down all the symptoms you are suffering and take that with you just in case you forget something you meant to tell the gynae at the consultation.


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