Advise regarding pain needed : hello. I am... - Endometriosis UK

Endometriosis UK

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Advise regarding pain needed

HL1988
HL1988

hello. I am posting on here as I have suspected endometriosis but am awaiting a gynaecology appointment and lap. however I am not very clued up on endometriosis and my gp isn't helpful.

can endometriosis call pain all the time? I have constant pelvic pain but a week leading up to my period and around ovulation I am in agony. A doctor at 111 prescribed codeine and mefenamic acid which eases the pain slightly. Can endometriosis cause fluctuating pain?

thank you in advance x x

13 Replies

Oh darling, endometriosis can cause many things, from inflammation to bloating and pain. It can even mimic some allergic reactions and then disappear all of sudden.

I’ve had a reaction where if I was exposed to the sun I would have rashes around my arms. I had for a couple of years than it disappeared completely. Then it appeared again. I’ve had inflammations like tennis elbow and golfers elbow also gone after 3 months. I’ve had pain like someone was pulling out my organs from inside out. Endometriosis is like an individual experience. Everyone has a different experience. But yeah, yours could be endo too. If you get diagnosed for sure, than welcome sister to the warriorhood of endometriosis. We are all warriors here. We have been enduring a horrible and excruciating pain.

Wow this is super interesting, I had a reaction to the sun years ago and swelled up with rashes. (the air stewards had to put my hands in the ice tubs for relief on the flight home from holiday) The pain was awful and the drs had no idea what caused it. Every time I went in the sun after I had to be really careful as it would come back but not as bad. Until one day it just stopped 🤷‍♀️I have been suffering with pain for years with my periods and ovulation which seems to be getting worse or last longer.

The Dr has recommended the mini pill instead of exploring by referral because of the current situation but I really don't want to start that and mask what my body is doing.

Is it OK to just take pain relief and natural things and see how it goes and maybe ask to be put on the waiting list.

Well, you are having the same as me. I also was only taking pain killers like ibuprofen and naproxen. However, I have decided to take progesterone and will be on it very soon. Endometriosis depends on oestrogen and I’m getting sick and tired of every second month or so I get a surprise disease mimic from endometriosis. I’ve been lactose intolerant, I’ve been allergic to sun, I had multiple inflammation around my body, from time to time I’ve been bloated, I’ve been having all sorts of inflammation and now I’ve had enough.

Wow bless you, I am not surprised you have had enough! Have you been diagnosed? I really hope the progesterone works for you 🤞I think that's where my hang up is. Despite having pain for 15plus years and going back and forth to the drs for years it is only this past year where I have even thought of endo so the more I research the more I can relate to and would really like to know one way or another or at least talk to a specialist before committing to different treatments apart from pain relief.

Fingers crossed you get on well with pill and they start working quickly x

Yes, I’ve been diagnosed 7 years ago.

While I was pregnant I had very little to non pain. That because my progesterone level was high. I need to see if man made progesterone has the same effect on me. X

Yes endometrosis can do all this 😭 tho some doctors wont have this knowledge, i kept getting sent away with ibs (soley because of swelling) very frustrating!

Regarding ovulation, be careful as adenomyosis can present itself like endo, tho can be a little more complicated to treat!

Hope you get answers soon

HL1988
HL1988 in reply to Andiepand

Thank you for your reply.I have had a diagnosis of IBS for many years, abdo pain and bloating has always been put down to my IBS. I am now wondering if infact I haven't got IBS to the extent that I have been made to belive and that it could infact be that i have had endometriosis for longer then when my symptoms started to get really bad. My symptoms have been worsening over the past year.

Thank you again for your reply x

Yes sadly it can. I have daily pain because of endo. Have they ruled out Pelvic Inflammatory Disease? I would pick another GP, before the appointment read about PID and ask them to do the appropriate checks. It's very important it's caught early.

Have they sent you for a smear to check it's not something more concerning?

Personally I wouldn't ask, I would insist. It's the only way to deal with uneducated GPs.

If you would like info on natural things that help with pelvic pain then please send me a DM, I'll reply with the info.

Best wishes

HL1988
HL1988 in reply to TennisAM

Thank you so much for your reply.Sorry to hear you have daily pain.

I have was admitted to hospital with pain in December and they did swabs and in the past few months I have had many a internal pelvic examinations and have been told it is not PID as I asked if this was a possibility

I would really appreciate advise on other ways to ease pelvic pain. I have IBS so have to be carful with the painkillers I take but when I am in so much pain the consequences of painkillers get forgotten.

Thank you again x

TennisAM
TennisAM in reply to HL1988

Hi, glad it's not PID, I've sent you a private message with the info. You should be able to see it in the chat section.

Hi. So sorry to hear you're experiencing so much pain. Yes, endometriosis can cause all sorts of symptoms. One thing worth thinking about is if there are any dietary triggers. For instance, I discovered that if I have more than 3 cups of green tea in a month, I can be in the most horrific pain during my period and can easily end up in A&E. I have a niece who experienced the same thing. I don't drink much green tea anymore! GP's and doctors in the NHS are often wonderful, but they don't get very much teaching on dietary stuff, so they are unlikely to give you any advice in regard to this, but it could be worth keeping a diary of what you eat and drink, just to see if there are certain things that make your pain worse. Also, I'd consider getting a tens machine to help. I use the Ova tens. It doesn't take the pain away when you're in agony, but it can certainly help at times. Hope you feel better soon!

Endometriosis, according to the different parts of the disease, the symptoms are different. It is closely related to menstrual cycle, and patients are often characterized by gradually aggravating secondary dysmenorrhea, which can be combined with other symptoms. And about 25% of patients have no symptoms.

Your symptoms look like endo. Make a gynaecology appointment ASAP. If you are seeking a herbal treatment for endo, maybe fuyan pill can be a choice. Also, endo may lead to infertility, you must pay attention to it.

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