Somebody talk to me about endometriosis

[FeatheredThing]

I have an appointment with a gynaecologist in late March for possible endometriosis but in the meantime I'm at my wits' end.

I'm currently experiencing a lot of pain and have been for a long time. It comes and goes at all times of the month. Heavy cramping pain, often radiating down into my thighs. I don't have periods as I have the Mirena coil but I spot at random times of the month. I know when I ovulate from an ultrasound. The pain is worse around ovulation but by no means limited to this time.

The pain gets so bad that I can't do anything other than curl up on the sofa with co-codamol. My lower abdomen swells and it feels like someone is ripping my insides out. Unlike period pain (at least in my case) it just comes and goes in shortish bursts, although sometimes it lasts for hours and can go on like this for days. Sometimes it makes me feel dizzy. I've also had several cysts.

I haven't had a 'natural' period in a long time as I've been on hormonal contraception in one form or another for years, but when I did I would have terrible cramps, again radiating down my thighs. I would bleed for three days then have a day or two of no bleeding before two days of very heavy bleeding and cramps that would have me howling in pain, rocking back and forth.

I have ongoing issues with pain in my urethra that they can't find a cause for (no cystoscopy done yet) and ongoing problems with my bowels.

A GP said it would unlikely be endometriosis as I have the coil - is this true?

Does this sound like endometriosis? It's so painful tonight

Hi. I have severe endometriosis and adenomyosis (endo in the muscle of uterus). Endometriosis has caused me severe cyclical pain, as well as pain with going to the toilet before and during for bowels and bladder.
It has been progressive and got to the point that I was increasingly bed bound. I have since had two laparoscopies, the most recent has removed all signs of it. I am feeling so much better now. This is what I have leaned during my 25 years of struggling with endo before finally being taken seriously:-

• you have to push hard to be heard. Be factual and talk about how the pain affects your life. Take someone with you to the appointment. Describe how you can’t function in that pain.
• endo doesn’t show on an ultrasound generally. If it shows on an MRI it will probably turn out to be severe endometriosis as the anatomy starts to get distorted at that point. You’ll probably start investigations with one or both of these but laparoscopy is what’s really needed
• everyone thinks endo = reproductive organs but no, my bowel and bladder symptoms were terrible due to endo on them. Eg severe pain before going to he toilet and during too (seeing stars). Couldn’t go then rushing to go. Also constant urine infections which aren’t actually infections more your body fighting the endo tissue, urgency. Also on ureters, with a full bladder terrible flank pain. This is called extra pelvic endometriosis
• if you have these kind of symptoms bowel / bladder according to NICE guidelines you need to be referred to a BSGE centre- these are the endo specialists
• the pain caused me terrible nausea, fatigue and anxiety. When it goes away it’s like a weight being lifted.
• I found it so hard to get my head around at the start but surgery was the way forward. The best surgery is excision surgery where all endo tissue is cut away. Not ablation where it is burnt.
• as endo is hard to diagnose without surgery you will need to advocate well for yourself. Research specialist ideally BSGE centres and ask to be referred to a specific consultant
• hysterectomy only deals with adenomyosis not endometriosis
• Facebook groups are great. Endometriosis UK FB group also Nancy’s nook for reading up and surgeon lists for excision specialists. Look for the best surgeon you can. Even on NHS you should be able to be referred even if outside area I believe.

Best of luck - DM me if you like. Also complete bollocks that you can’t have endo with the coil. Endometriosis makes its own oestrogen so it doesn’t need it from a cycle or a pill so it can keep growing even on the coil x

Featheredthing

What Busymummy16 wrote. You will indeed need to be persistent in order to get answers.

This is indeed all highly suspect of endometriosis being present and I am glad to see that you will be seeing a gynae in March. Would see if there is a BSGE centre near you and if possible get a referral to such a place.

In the meantime do keep a detailed pain and symptom diary particularly if you do not already do so and note everything like pain on a scale too from 1-10. Endometriosis can also become problematic to many areas of the body outside the uterus as well so am sadly not all that surprised to see that you have bladder issues too.

Your GP is completely wrong by saying that its unlikely to be endometriosis because you have a coil. It just shows how ignorant that person is when it comes to such issues!.

If I am correct as well, the coil is not licenced anyway as a treatment for endometriosis.

@Busymummy16 thank you so much for your detailed reply. I’ve been feeling like I’m going mad. I’ve had many UTIs, pelvic pain, random blood in the toilet and incessant bowel problems. I regularly (1-2 days) get stabbing pains in my urethra but no infection is present.

Sometimes the pain is so sudden and sharp I cry out and have to grab my crotch . Sometimes pain before and during urination but again, no infection and antibiotics make no difference. They did an US of my bladder and kidneys and everything was normal. I currently have three referrals: urology, gynaecology and gastroenterology. It’s ridiculous.

I don’t know if it would make any difference but I experienced unusual levels of pain when the coil was fitted. The doctor told me I was basically having contractions. I was on my hands and knees screaming afterwards.

At times, the pelvic pain that radiates down my legs is so bad I feel faint. Also interesting what you say about nausea and fatigue as that’s an issue I’m also having, but unexplained. There was a night where I had sudden extreme pain in my pelvic area and was nearly sick from it. I literally crawled to bed and saw the dr the next day who said it could have been a burst cyst.

@AttilaTheMeerkat Thank you. I will look into BSGE centres. I’m keeping a rough diary of the pain. The last week has been horrendous and I’m neither due a period nor ovulating.

What’s a laparoscopy like? I wish it were as simple as having an MRI but obviously I hope, if I have it, it isn’t so bad that it would show up on one.

It really sounds like you have endo: I would steel yourself as it could be severe from what you’re describing. It sounds very familiar to me. But either way you’re on the path to getting better.
I nearly passed out from a smear test a few years ago so I know how you feel re cool fitting.
A laparoscopy is not too bad. Have you had an op before, basically you’re falling asleep then you wake up. Pain can be bad a few hours afterwards but you will get painkillers like tramadol or codeine often to keep it at bay. It is a fairly long recovery or at least it has been for me as I had a lot removed. But after a few months and I’m back to normal.

Surgery can seem scary but it is the only way I had to get my life back.
Please find a good surgeon. One that will only do excision and preferably one on Nancy’s nook (Facebook).
I didn’t and the first surgery was not brilliant and I wish I had had surgery that would have resolved it first time.
Best of luck xxx

Thank you. All of this is very helpful and I’ve screenshot the thread. Currently lying in bed with a hot water bottle feeling like my insides are being ripped out.

Appointment on the 26th so I’ll DM you if that’s OK to let you know how it goes x

I would put a crisp fiver on it that endometriosis is actually the root cause of all your symptoms. You do not mention sex but deep pain during sex can be indicative of endo being present as well. I winced in recognition at grabbing your crotch and the pain down your legs; used to get that too (and in my case that was due to endo aggravating the sciactic nerve).

Ultrasound scans do not detect endo if it is there; the only way mine was all seen was via laparoscopic type surgery. I've been offered the coil subsequently but I refused it due to the diagnsoses I received. Told the GP that I understand it is still not licenced as a treatment for endometriosis.

If you have a laparoscopy done I would not just have a diagnostic one; the surgeon who operates will need to be able to remove any endo deposits that are there. I was advised at that time to have two days off post op (needed those two days). The worst part for me was the pain in the shoulders afterwards (the gas used to give the surgeon a better view travels upwards) but painkillers took the edge off it. I was a day case and left hospital that afternoon.

Do ensure that you are given a follow up appointment a week or so post op to discuss the findings. You do not want to be told about this when you are in the recovery room; apart from anything else it is poor practice on the part of the hospital. Photos of my endometriosis were taken for training purposes and I saw those too (my uterus looked like a Jackson Pollack painting). I still remember thinking that no wonder I had been in pain all these years. But nobody knew why and I had many of the symptoms correlated with endo.

I will happily give you a list of questions to ask the surgeon post lap if you wish.

@Attillathemeerkat Thank you.

Sex is generally OK but there are times I get sharp pains in what feels like my fallopian tubes, and sometimes painful cramping radiating downwards afterwards. I also occasionally bleed after sex.

I have Bupa but the very basic plan which doesn't include diagnostics (stupidly - going to change that when my renewal's up). My concern is that if they can't diagnose endometriosis without surgery, I'm going to have to get the surgery on the NHS which will mean long waiting times. I'll have to see what the gynae says and contact Bupa to see what, if anything, they can do.

Interesting what you say about the sciatic nerve. I get intermittent sciatic pain in my lower back/buttocks/leg which I've never gone to a doctor about. I wonder if that could be linked.

With Bupa maybe could you seek a laparoscopy to remove/treat the disease (rather than a diagnostic one?)
Whereabouts are you based? There a few true expert excision specialists around that have a brilliant reputation and I would go straight to them with symptoms that sound like severe endometriosis. Don’t waste your time on a diagnostic laparoscopy. I had a fantastic surgeon and happy to pass details on via DM
My photos from my laparoscopy looked horrendous too, such a mess. He removed a huge amount of rectovaginal endo (shaped like a butterfly 😂 it’s his surgical approach to the area).
Best of luck . Push hard. You can and will feel better with the right treatment xxx

Also I had the sciatic pain in buttock and leg, lower back pain too.
Also numbness in toes.
It’s so much better now post op.
My other symptoms included sudden pain in the chest (turned out I had endo on diaphragm too 😱) this was also removed.
I also had years of infertility, a number of miscarriages. Plus all he bowel/bladder problems.
It’s a terrible condition.

Just another thought about diagnostics, if they want diagnosis before an operation, could you pay for an MRI? It might not show, but since it sounds like severe endo it could show on mri. Mine had caused anatomical distortions and patches of endo/fibrosis could be seen.

@Busymummy16 thanks so much for your replies. This thread has been a real eye-opener.

I’m in Sussex - not sure if that’s anywhere near the surgeon you’re thinking of?

I think I’ll ring Bupa in the morning and try to think carefully about how I phrase things.

Try to get referred to Mr Shaheen Khazali. He is in Surrey. Not far from you. Best of luck x