Please Help Me, I'm desperate. - Endometriosis UK

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Please Help Me, I'm desperate.

Boodie
Boodie

Hi everyone, I could really do with your input. I was diagnosed with pelvic inflammatory disease in dec 2015 and it became chronic and I have had multiple infections over the past 2 years. I suffer chronic pelvic pain and dysfunctional bleeding. I suffered dysfunctional bleeding prior to the diagnosis of PID also. I want a baby and have tried since 2011 up to dec 2015 when I was diagnosed with PID. I'm now at a point where I no longer trying to have a baby but I am trying to get my quality of life back. I have been on lupron injections at the start of the year but it have me terrible side effects. Then I tried microgynon 30 combi pill but started to get ocular migraines so I had to stop them. Then I went on cerazette and that is when my pelvic pain increased. I lasted 5 weeks on it and then I went on oral provera tablets 10mg 3 times a day but still had incrwased pain. Now I have just started Norgeston and I have had pain still which us currently in my uterus. I have been on pain killers for 9 weeks every day . I cannot go on like this. Being in more pain from a pill that is supposed to help me. I think my gyne is running out of options for me and so is my GP. I am 38 and if I really have to I would give up having a baby to have a hystorectomy and try and get my life back. I am overweight so the dysfunctional bleeding could be estrogen dominance or a side effect of pid. Please can anyone suggest a try ing else to try, natural or otherwise. I cannot have iud or coil due to high risk reinfection from pid. I am desperate right now 😢😢😢😢😢😢😢

14 Replies
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Oh you poor thing. I'm so sorry about how crap a time you're having.

I have quite different circumstances to you but I know what it's like to be desperate and to feel like you've no options. That's a horrible place to be.

From what I've read, it seems like you've not been diagnosed with endo but I'm guessing you think that's a possibility? Have you had a laporoscopy, mri, or trans vaginal ultrasound? If not, then you may want to ask for these to see if anything comes up.

It does sound like your hormones are all over the place?! And it seems like you've been changed medications a lot. I'm just wondering what this is doing to you hormone levels? Have you tried a prolonged period of not being on any synthetic hormones?

I actually a big believer of listening to your instincts. If you sit quietly and really give yourself time to feel, what does it feel like it's going on in your body? And what does it feel like your body needs?

Your body really will want to heal itself and sometimes we can get caught in this unhelpful battle between our mind and body but actually we're all on the same side!

You mentioned natural things, which is how I want to manage my recent diagnosis of severe endo. I'm still looking into it but it seems an endo friendly diet is a good idea. It's all about balancing hormones and managing inflammation. So even if you don't have endo will certainly apply. If you google it, you'll find more info but it's essentially no gluten, processed sugar, dairy, meat, processed foods and soy. It is a restrictive diet but its very healthy. I love veg so I've been enjoying it. I've entered it as a vegan already so it was probably less a shift for me. If your diet is hugely different to that, I'd suggest doing it gradually and give up one NG at a time, get used to that for a while and then add in the next thing. Personally, I think dairy is one of the worst things to eat if you have hormone issues, followed by meat. Both are full of animal hormones and that's the last thing our poor body's need! So maybe try that first if you're going to do it.

I had a real mess around getting diagnosed and had to deal with my situation without any medical help for 2 years. At first I felt hopeless but then I started trying alternative options and I've had so much relief from all of them. I think it's a personal thing what will work and I really think it's about trusting your instincts and really nurturing your body but for me it's been, chiropractor, physio, acupuncture, reflexology, reiki, meditation, yoga and yoga nidra. The things that have helped me the most are the chiropractor for my hip/back pain, meditation for keeping me sane, yoga to help with everything and yoga nidra to help with my fatigue.

I've also been looking into cbd oil. I've been hearing amazing things about it helping with pain, sleep and inflammation. I just waiting on pay day to get some. Everyone seems to recommend the cbd brothers. It's not illegal and its not a drug that will get you stoned.

I know it can feel so hopeless but remember your gynaecologist is just one Dr and the medical approach is just one way of helping. There are lots of other ways. Give yourself a big hug, a bit of rest and when you feel you can just trust yourself and follow what you need.

Xx

Boodie
Boodie in reply to weekari

Hi there, thank you so much for your reply. I don't have endo but suffer Everlasting effects of pelvic inflammatory disease with chronic pelvic pain and dysfunctional bleeding . I am currently on norgeston to control and stop heavy bleeding but this is the 4th pill I have been on in 6 months and it is still not taking my increased pain away which originally started 9 weeks ago when I started cerazette mini pill. It is interesting you say about sitting quiet and listening to my body. I feel as if the pill is giving me inflammation in my pelvic area and doing me more harm than good but I feeing i cant come off it due to what may happen with the bleeding. I went to see a traditional Chinese medicine doctor today and she suggested acupuncture and gave me some herbal pills to try so we can try and get my hormones and body balanced so I can eventually come off the pill. My mum came with me and she is my biggest supporter but today after the consultation she did not want me to take the herbal pills for fear of doing more harm than good or causing a bad side effect like a heart attack. I went into a complete rage and started shouting which I never do with my mum and I'm just so upset about the whole thing the consult and shouting and having to put up with pain from a pill that is supposed to be helping me. I just dont know what to do now. I'm seeing my consultant gyne on Monday but I know she won't have many if any further options for me apart from a hystorectomy. I don't know whether to just try the herbal pills and see, I keep thinking if I die, at least I died trying to cure and help myself instead of stagnating and being in pain day after day and taking painkillers. I am also taking maca powder and hemp protein powder and trying to eat healthy. I just dont want to be on these pills anymore. I want my life back.

weekari
weekari in reply to Boodie

Oh god that sounds awful. I'm sure your mum is just scared for your bit that's not a helpful way to go about it. I guess we can all lose our calm sometimes. Did your mum have a reason for thinking it could cause a great attack? It seems like quite an unlikely outcome?

Ultimately its your body and your choice.

I haven't taken Chinese medicines but the physio I see uses a lot of Chinese medicine philosophy (she's Chinese) and it does seem to make sense. It's just another approach. I personally think it's good to be open minded to these things and some older cultures really seem to have things a lot better figured out. Did the person you see explain it all and seem to know what they were taking about?

The thing is, most of the medication we take from Western Dr's comes with side effects and risks too. Its always about balancing it up.

Just let the dust settle on today and see how you feel about things tomorrow. They're are loads of things you can try, you've just not found the right approach yet. Trust your instincts 😊

Hi Boodie,

how are you now?

Hi Boodie

Are you any better now? I am a similar age and trying to conceive. I have now got PID for the third time, ironically the cause of my chronic PID is several miscarriages and invasive fertility treatments not an STI, but I’m still not giving up hope.

I know it’s a while since you posted, but I would suggest to you tranexamic acid to help slow/stop the bleeding if you’re still having problems. It’s not a hormonal treatment so won’t affect ttc. You could also try norethisterone, which is hormonal but different to the pill. I wondered that the bleeding might be because the PID has not resolved and you need more/different antibiotics?

Hi MissyLucy,

May i know what’s your symptoms?

How did Dr diagnosed you with PID?

Did you had laparoscopy?

I think i might have PID due to miss carriages too, my symptoms are pain on my lower abdomen, stabbing pain etc

Hi Introuble

Sorry to hear you are suffering.

First time years ago I did not get a proper diagnosis, I was told IBS. Ironically I think I got the infection after a laparoscopy that diagnosed minor endometriosis. I only realise now it got worse after the procedure not better as I contracted PID. I had a dragging sensation in my stomach, could not walk very far and painful urination. I had it for 12 months and it finally went away on it’s own. I suspect it was because I had repeated courses of metronidazole for dental infections. So this was never officially diagnosed, but I feel like it was PID.

Second time was after miscarriages and IVF procedures. I’m not sure which caused it as I don’t know how long I had it as symptoms were mild to start with and gradually got worse. I had smelly discharge which I thought was BV, I then started getting a bloody discharge and felt unwell. I was diagnosed by symptoms and antibiotics cleared it up. I felt so much better so no further investigations done.

Now I have it again following IVF procedures or it’s the previous infection come back. I’ve had it for months as I thought the symptoms were related to cysts I had after IVF and it’s steadily got worse. Pain in my lower stomach, pain in my lower back, pain in hips, pain on ovulation, heavy painful periods, smelly discharge (again I thought BV), bleeding between periods, painful urination (suspected UTI, it wasn’t), more recently lower left abdominal pain made worse by eating. Diagnosed by symptoms and past history and given antibiotics, waiting to see if they work.

Each time I’ve had it the symptoms have been slightly different and they can start off not too bad and creep up on you or be mistaken for other things. I would say if you suspect you might have it don’t delay going to the doctor or wait for it to get worse. If you’re not getting the answers you need be persistent. You don’t need a laparoscopy to get treatment, if it’s suspected that’s all they need to prescribe antibiotics and they can also do swabs.

Hi,

Thanks for the reply MissyLucy...

You have been through a lot

Mmm but in my case i guess it’s been untreated for very long time and not enuff antibiotics...

Been seeing so many Dr, no one said i dont have PID...

don’t know how to get more antibiotics

You could try your local sexual health clinic, they are used to diagnosing and treating PID. I think I was lucky this time as the doctor I saw at my GP practice also worked at the sexual health clinic and knew all about PID.

Yes u so lucky Dr Diagnosed by symptoms..

I can’t stand the pain

Sorry to hear that you are in pain. I’m still waiting to see if my antibiotics work.

Hi,

I still on antibiotics, one day the paif gone and suddenly it comes back!

On the 31Dec , i had appointment with my Dr, i ask her my concern about having a PID, but she said NO, you don’t have a PID.. she said if i had PID, i would jump and scream when he touch or examine my abdomen.

I’m the same, I’m better some days than others on the antibiotics but think I’m finally getting better now I’ve been on them a week.

Yes i feel a lot better but not 💯% ,still can feel pain here and there plus the feverish, flu and coughs ..

But i sleep well for the past days, no more pain when laying down

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