Worst flare up I’ve ever had, can anyone ... - Endometriosis UK

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Worst flare up I’ve ever had, can anyone relate?

MegTweed
MegTweed
7 Replies

Basics - diagnosed after 9 years of pain and endo was lasered, was told it was minimum (by a standard hospital that had no knowledge of the condition). A year later I had another op as pain got worse and they told me that the endo hadn’t grown back and fitted the coil. Had the coil removed after a year as my pain came back and I had depression.

After my own research I asked my Dr to refer me to a BSGE accredited hospital where my now Dr explained that he thinks my endo is growing very deep and that is why general gynaecologists have not been able to locate it. I have been seeing pain management for the last year and I am due to see the Dr again on the 12th September.

The flare up I’m having at the moment is horrendous. I get all my pain in my right side and it spreads to my hip, stomach, groin, leg and back. It had been SO awful these past few days and has only got worse. Usually exercise helps it but I’ve been on a couple of light runs and done some yoga and nothing has helped. I’ve used my tens machine and strong painkillers but again, haven’t helped. I’ve now started to bleed brown blood and some of it is quite clotty. I’ve never had this before and I don’t know whether I should be worried. I’m not ovulating and I’m not due on. I’ve felt so so sick today too.

It has been hurting when I use the toilet too, and I keep getting horrible pains in my vagina.

Has anyone else had these types of flare ups?

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Alex9

Hello Meg

I had a flare up earlier this year it lasted about 4 weeks and i think it was stress related as i was going through a break up and consequent life changes.

The pain was as you describe but I didnt have the random bleeding- this might be because i am on the pill.

I would definitely go back to the doctor to get it checked out as they take unusual bleeding seriously

I hope u feel better soon . I tried to rest as much as i could and had a hot water bottle on my back and tummy every night - probably not ideal in this heatwave ( if u r in the uk !)

Naproxen taken regularly did also take the edge off for me

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HellyLlewelly

Meg, I don't know if you can read my past posts, my (endo) symptoms were debilitating to 3 days in bed during menses and more time in bed with chronic back hip and shooting down the leg pain.

I gave had went ahead this year a Hysterectomy as my family was complete. I cannot speak for your situation of course and I'm not a physician so not recommending same for you, here is my story....

Symptoms:

:

Chronic back pain in coxics in particular

Stabbing pains in womb

Twinges, cramps, low down dragging pain, stabbing pain in conjunction with ovulation times.

Chronic fatigue, no motivation, stiff sore finger joints, swolen fingers fluid retention, arms and shoulder pain.

Almost urinary in content, increased urinating, painful bowel movements during menses, heavy bleeding with clots, nausea, depression, anxiety.

Lost life occasions, cancelled plans, holidays, booking life around 3 days in bed bleeding monthly and chronic intermittent back pain.

The Consultant confirms a lab test will show Adenomyosis after my MRI scan, womb had the classic signs, boggy, lesions, scar tissue, enlarged. No endometriosis seen on scan.

Had hysterectomy in March 2018 -

Unfortunately my hysterectomy proved to also have me with considerable Endometriosis which wasn't present via mri scan on 12/03/17...this often is only saw on laparoscopy/hysterectomy.

My bowel was pinned down to my pelvic wall, 1 ovary engulfed.

(None of this was saw in MRI*)

My bowel was shaved of endometriosis during my op.

Monthly what was worsening was going to the toilet the urge to urinate was up, pain in the morning with a full bladder and pain to defecate during menses was excruciating and stabbing through to the vaginal area. Urinal leakage in bed after having alcoholic drinks.

I'm not dealing with any of these symptoms now just the post hysterectomy tiredness and weak muscles that I'm working on. I have back pain but it's more my unstable core and that needing time and strengthening exercises.

I have not cancelled a plan in 3 months! No bleeding and no doubled over yoga pose stances to try and massage my stabbing pains out of my abdomen.

No being hit by mad stabbing pains out of no where.

The coil was rejected by my uterus in 2004. 7 months of it radiating pain down my thighs.

Do you take well to the pill and the Like?

I didn't.

I'm grand on hrt patches. I'm on my 39 so I need my hormones as I'm in surgical menopause.

The hrt patches have helped emmensely.

Don't give up, no matter what your solution is there is life to be lived.

If my endo comes back I will deal with it as it comes. Right now I'm living not having most of ^ above.

Good luck.

Helly.

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MegTweed

Thanks for your response, sounds awful but I’m glad you are finally feeling relief after your hysterectomy. On days like today I am just itching for everything to be taken out, but I’m only 26 this year and would like a baby by the time I’m 30 so clearly this isn’t an option for me.

I am hoping the specialist hospital operate on me as I would benefit from having someone who actually knows what to look for, and if he finds any endo to cut it out and not laser it out.

No I do not take well to any extra hormones such as the pill and the mirena (even though it’s a low dose of hormone).

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HellyLlewelly

I think if you get the referrals in to the right hospital specialist etc you are on the right tracks as many womem on here have mentioned the bsge centres;

bsge.org.uk/endometriosis-c...

You have your fertility to protect at this stage so do try to go direct to specialist physicians as thise who are just gynae and not endometriosis specialists will usually throw their hands in the air not knowing what is causing your pain.

Good luck with your baby plans and discuss your fertility options with the the specialist too!

X.

H.

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MegTweed

Thanks, I am already with a BSGE hospital, my next appointment with the DR is the 12th September. I have been making a record of all of my current symptoms! X

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HellyLlewelly

So you are hun I have just read your initial post, good for you, thry are who can help you the best.

In response again to your post the breakthrough of the blood and clottish brownish old blood, it sounds like, unfortunately you like me had the passage of blood regardless of your ovulation stopping. I know this is how they describe it (ie stopping periods) but I believe we still are able to produce small amounts of hormone so endometrial cells that are AWOL ie all over our other parts like ovaries, bowel, pouch of Douglas, bladder etc can still slough away causing the bleed.

Points of concern....

Did you have had reactions/ experiences on contraceptive pills?

Did you every try the period hold off tablet Norethistrone?

On the pills I had depression and I also had intermittent bleeds, shooting pains in the arms and legs so feared pulmonary embolism etc.

On Norethistrone I felt like I'd put a tampon into the tip of a volcano, I woukd swell, have the worst mood, I would be trying with all my might to hold off this bleed that was trying to bust its way through, quite horrendous. I managed my wedding day and unfortunately had to stop the tablet and bleed about three days into my honeymoon.

I think sometimes these symptoms we have show us that we are "serious" breeders that need the release and all the pain is showing you that your endo is quite serious.

What I found was the pain to go No.2 and bladder pain only got worse from when I first started to notice it. Sorry it's not more positive but you sound like you need your endo excised.

On a positive note I had a mild excision done in March 2012 and was pregnant in October 2013 as the consultant who did it recommend in taking it away with a chocolate hidden nasty cyst that I need to try for a family sooner than later.

Good luck pet.

H.

X.

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MegTweed

I have been with them for a year. He told me that he thinks it’s very deep and he wanted me to try other options before operating as he feels it will be a complicated operation. I’ve been to pain management and had some steroids injected into my nerves which helped my nerve pain in my buttocks and right side but didn’t help the endo pain.

No, I do not react well to pills or the mirena. I got depression and anxiety with the mirena.

When I had my internal examination at the BSGE centre he said that my pouch of Douglas is very tender and so I have researched symptoms of endo on the POD and mine match with them.

At the moment I am due on my period in a weeks time so my pain is naturally worse. My right hip is so painful and it’s been hurting when I go to the toilet. I get period pain if I slightly push down if that makes sense.

I have requested a sooner appointment so I am hoping I get a letter through soon as I don’t think I can wait till the 12th Sep just to have a check up. I am going to push for an operation because I haven’t ever been operated on by someone who is specially skilled in endo. I hope that they will be able to excise my endo and it give me some sort of relief!!

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