Waiting to be tested for endometriosis. A... - Endometriosis UK

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Waiting to be tested for endometriosis. Any advice on pain while I wait to be seen by a gynaecologist please.

Hpaddict profile image
13 Replies

I'm 35yrs old, I suffer from gastritis, IBS, mental health issues and my doctors suspects I have endometriosis. I'm awaiting a pelvic scan and to be seen by a gynaecologist, as been referred a month ago and know there will be quite a wait to be seen.

My doctor has placed me on the mini pill, and this month I'm hardly getting any bleeding, just spotting really since yesterday. But I'm still getting the feeling of sickness, the pain when I go for a bladder and bowel movement and the really bad pain in my lower back and abdomen, as if I'm properly on and it's really bad as feels like my abdomen is being ripped apart and affects my IBS and feel like im leaking urine all the time. Last month when I was on, I was given antisickness tablets and tramadol for the pain.

Does anyone have any advice on how to deal with the pain until I am seen by a gynaecologist and get properly diagnosed, as I'm really really struggling to deal with the pain, as doesn't matter if I'm sat up, lying down or walking, the pain is just as bad and doesn't seem to ease or go away, as really affecting my sleep, my emotions, my mood. me doing normal activities and my pain threshold.

Any advice or tips would be most grateful. Thanks in advance

Laura Jayne x

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13 Replies
Laurak26 profile image
Laurak26

Hi Laura

I’m quite new and also waiting for a diagnosis at the moment. I find mefenamic acid helps me a little, but my go to are paracetamol and codeine and a hot water bottle.

I hope you find something that helps. I understand the effected sleep and on-going pain x

ingo33 profile image
ingo33

I have stage 4 endometriosis, adenomyosis, pcos and fibroids, so I get a lot of pain. I find mefanamic acid very good. It’s the only painkiller that doesn’t make me tired. On a bad day I’ll take it with paracetamol. I also go for a walk - movement weirdly eases the pain. On occasion I found cold water swimming obliterates pain too.

eunha profile image
eunha

I'm constantly using either an electric heating pad or large gel ice pack. Depending on the day, one or the other helps a bit

Sorry you are going through this pain every day. I hope you get some relief soon 💕

eunha profile image
eunha in reply to eunha

Since you can't tolerate the heating pack, hopefully ice would be ok with your ibs. You may want to try investing a couple back sized gel packs that you can rotate so they have time to get cold between uses. I do 20min on my back 10-20 min on my stomach, sometimes just before bed, or multiple times a day.

Love to you 💕

SimplyDeeDee profile image
SimplyDeeDee

Hi Laura, Sorry you’re going through a difficult time, we ladies get hit with it all don’t we and it’s truly exhausting and not to mention extremely painful.

I tend to alternate with things - magnesium hot baths help to relax my muscles a bit and I also have the rub too. Aloe heat rub is another frequent use as well as a pulsating tens machine. This is in addition to all the things the ladies have mention previously.

I also drink a lot of mint tea too to help push any air through because that added pressure is direr.

AllthatGlitters profile image
AllthatGlitters

Hi I have adenomyosis and endometriosis and suffer quite a lot of pain. I take naproxen, ibuprofen, when it’s really bad I take tramdol. My tens machine is good and I often use a hot water bottle. When my symptoms really kick in and I have labour like pains, there isn’t much I can do apart from take medication and go through the pain, it’s awful. Sorry you live with this too, it is one of the most painful diseases, it’s in the top 20 x

Hpaddict profile image
Hpaddict

Thanks for the tips. Yes the pain is incredibly strong and hard to deal with. I was given tramadol by my doctor because I can't take any anti inflammatory medication, such as ibuprofen or mefanic acid because unfortunately for me, anti inflammatory causes me to have an asthma attack as my asthma does not tolerate it. I also can't use hot water bottles for the pain because when I try to, my ibs kicks off as doesn't like a lot of heat but I do notice that sometimes, not always, a hot bath can help with the pain. My doctor says because I can't take anti inflammatory medication I don't really have a lot of options for the pain except occasional tramadol but advised not to take it often and why he is trying the mini pill which seems to be helping my monthly cycle as not really bled this month but doesn't help with the pain.Quick question, do we know roughly how long it takes to be seen by a gynaecologist after referral. As I was referred a month ago, same with the pelvic scan and am still waiting on both.

As hope I can get help soon in order to get the diagnosis confirmed and to find ways of dealing with the pain, the lack of sleep and the emotional side of this.

Thanks

Crazycatladyjones profile image
Crazycatladyjones in reply to Hpaddict

From own experience and from the info seen on this site at the moment thenwait is arouund 9-12 mths for gyne, dependong on what happens with ur scan. My scan was quick within 4 weeks I think. Did the GP send you for bloods also? X its so frustrating hope all goes ok xxxx

Hpaddict profile image
Hpaddict in reply to Crazycatladyjones

I am still waiting for my pelvic scan, and hopefully I will have bloods done on Friday, as the doctors surgery keep rearranging my blood test and yes is frustrating as want to know proof of why I have been getting this pain for so long and problem periods etc.

Crazycatladyjones profile image
Crazycatladyjones in reply to Hpaddict

Its just shocking isnt it the services are so so so stretched and waiting times are so poor. Good luck hope its not too long for your scan and moving forward xxxx if nthing shows on scan though, still push for a refeall to gyne and see if your local hosptial is registered as an endometriosis speacilast centre xxxx

Hpaddict profile image
Hpaddict in reply to Crazycatladyjones

I will do. I hope the pelvic scan isn't much longer and intend on pushing for a referral to gyne and partly hope they find something on scan so can see them quicker as sick of the pain and want to sort out a treatment plan.

1880emma profile image
1880emma

Sorry you are in so much pain . Pretty much like the rest I have 60mg codine prescription from the GP, Naproxen, paracetamol, and now looking at tramadol next . I use a Tens machine , I also take Serrapeptase, NAC and Agnus Castus which are all herbal remedies that help with inflammation, NAC is good for people with Asthma, Serrapeptase is an enzyme which is said to eat up dead tissue and Agnus Castus helps balance hormones etc . I waited about a year for a gynaecologist appointment and got offered private in the end through the NHS and have been told around six months wait for my lap

Dee_EndoUK profile image
Dee_EndoUKModeratorEndometriosis UK

Hi Laura Jayne

Sorry to hear you're having a tough time with your health at the moment. With regards to pain relief, we do have some information on our website that could prove useful. For specific details on pain relief options available to you, simply visit endometriosis-uk.org/pain-r.... If you scroll down on this page you can also download our Endometriosis Treatment pack, which also contains some useful complementary therapies that could support your mental health during this time.

Aside from our forum we also have face-to-face support groups all over the UK, where you can discuss your symptoms and the difficulties you are facing with other endometriosis sufferers. To see if there's one in your area, just visit endometriosis-uk.org/find-a.... If there's not one in your area, we also have an online support group.

Wishing you all the best - hope this helps x

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