new member advice on gp appts

[Magsag]

hi all, my daughter has what I think is endo. Although not formally diagnosed.symptoms include very heavy periods and large clots, extreme pain during period that she has to take days off work, feeling sick all the time, bleeding between periods. She’s anemic and on iron tablets. Has had scan and waiting for results. My question is how do we proceed at Drs instead of being told to just go on the pill. She really doesn’t want to do this as it makes her depressed. Can we ask for gynaecology referral? Dr is ringing her this week. Thank you

[CitizenErased]

You can definitely ask for a gynae referral. They can't force her to go on the pill, but they might try to convince her. If the pill makes her depressed, nake sure the GP knows that and that she doesn't want to go on any pill. Make it clear you want to seek an alternative. You might not get a gynae referral straight away. I had to go through loads of tests before my GP would even try to refer me. They often try to put up barriers, but just be persistent and you'll get the referral. I'd ask for some pain meds in the meantime too, as the referral will probably take a long time to come through. Waiting lists are super long at the moment. Good luck!

[Islas_mum]

hi this sounds a similar situation to my daughter. She also had headaches with the combined pill, she is currently trying the mini pill but if this doesn’t work she has been advised she may be better with either the injection, patch or implant. It seems to be what suits the individual so try push for a gynae appt to talk through the endo and potential pain management solutions. They can prescribe stronger painkillers and anti inflammatories.

Has she had an ultrasound yet? My daughters didn’t show anything but it is a start. The laparoscopy is next step but we don’t want to do that until after her exams.

Hope she is ok in herself and you find a solution soon x

[EndoCoeliac_Woman]

Hi!I'm very sorry to hear that. Be aware that scan may show nothing. Even when's is there. And keep the disk because you may need to show it to an endo expert. In my case one radiologist said nothing was there, another looked at it and was so concerned that I was referred for surgery right away. Having said that, look for endo gynaecologist, because general one may not diagnose it, even if it's a very very common disease. Last thing. Try to avoid pain killers for several days in a row. Before surgery I took them daily for three months to survive the pain and I ended up with a destroyed stomach (now I have recurrent gastritis) and basically they don't do anything anymore if I take them. So my heartfelt recommendation is to take them only on the days of the period when the pain is very strong, and try some other solutions like heating pads or electric stimulation like ovira.

All the best

[Endofitall]

absolutely you can and should. However I would suggest unless you have private cover or can afford this then NHS gynae can be months to years of wait in some areas so trying another type of treatment (there are lots of different hormone pill combinations and some progesterones are better than others, or depot or Mirena) etc in meantime can be helpful. Medical management of endo is valid and works for many people and if one can avoid surgery then all the better. But she deserves a gynae review so it should be both things being done (offered something to try by GP and referral) not one or the other. Best of luck

[Thena90]

Take her to a private endometriosis clinic, once you get the diagnosis you can go to the GP to get referred to an specialist. If you don't do that it will take so many years that your daughter may end up with permanent organ damage. Sometimes the ginecologist in the private clinics are also surgeons in the NHS and you can ask them to put you in their waiting list for surgery. NHS sonographers never catch Endo because they aren't trained, that scan results will probably said she doesn't have Endo, it's just a waste of time.If she doesn't want the hormones she can try with Chinese medicine (phytotherapy and acupuncture), I didn't believe in that and now I can't deny it helps me. Also follow anti-inflammatory diet and anti-inflammatory supplements (Omega 3, curcumine, DIM, etc). All of this have been prescribed and supported by both of the endometriosis specialist surgeons I've seen, and it works.

Also she can go to a pelvic floor physiotherapist. Hot bath with 500g of EPSOM salt.

I know it's many things but that's all I do so I can have a normal/functional life.

Hopes she feels better soon.

God bless you both.

[Julez88]

I’m on Norethindrone & it completely stopped my periods. I was on a horrible period 27days out of the month- I started the norethindrone & my period stopped along with the pain in my back,hips thighs and abdomen! It gave me a light headache and I felt tired the first week so the doc said take it before bed- it’s been great since .There’s also a progesterone based birth control “The Mini Pill” it’s not like the other birth control pills that have estrogen & progesterone. I’d recommend going to a specialist and. they’ll definitely know what she needs . I’ll bet they’ll do a laparoscopy especially if she’s suffering. from debilitating non-stop periods & passing large clots . I hope she feels better soon - speaking. from experience the sooner she sees a specialist the better - when they go in and do a laparoscopy they’ll remove the damaged endometrial tissue , cysts (if any) and any adhesions. It’s not a long procedure, you’re at work the next day or so & you’ll at least have an idea of what you’re dealing with & get the medication that works for her-Sorry for rambling it’s just that I know how it feels, it really does drain the life out of you I hope this hellos❤️

Good Luck