Today is the first day of my period which is always bad but this has been a nightmare. I've had a new pain - low down on the right hand side, radiating into my groin and down my leg, with these areas also getting pins and needles at some point. I was dx with endo 11 years ago, an MRI in December showed adeno and my uterus is now retroverted. I've been off the pill for about 18 months as 20 years of differing hormonal treatment had screwed up my hormones and cycle. I don't really want to go back on it before the lap I will hopefully have later this year as from previous experience it makes it harder to see and remove.
I'm on high doses of morphine which didn't touch the pain. I took tramadol, voltarol, paracetamol and more oramorph and eventually fell asleep for two hours. I've woken up and that pain is gone. I tried pressing on the area which didn't make the pain worse.
Has anyone ever had pain like this and know what it was? It was full on 9/10 pain (I almost lost my arm once in an accident and that was 10) and I was close to going to hospital before I zonked out, thanks to all the painkillers. I am so scared of it coming back.
Any ideas? If it comes back I will see a doctor, just wondering what it could have been.
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cupcakegirl
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I had low right sided pain which landed me in hospital for a week, however I can't help on diagnosis as this pain was the leading factor in me beginning a trail to endo diagnosis. I have a retro vetted uterus, kissing ovaries and large cysts. Gynae believes severe endo with possible bowel and bladder involvement. Currently waiting for MRI before operation can be carried out as they need to know if they need a bowel surgeon.
Best of luck with your surgery - I know how scary the not knowing is, I hope you get some answers soon. The findings do sound like endo is the most likely cause x
This sounds as though you might have experienced a ruptured cyst. These are usually on or in the ovary. There are different types of cysts. Cysts due to endometriosis are called endometrioma or chocolate cysts. The "chocolate" refers to the colour of the blood found in these cysts. Red blood is fresh and full of oxygen. Brown blood is old and delpeted of oxygen. You might even see some during or after your period looking like a brown discharge.
The pain from a ruptured cyst is excruciating. It has happened to me several times and can be quite scary and upsetting if you don't know what it is. On the pain scale a 9 is usually ambulance time but the trouble is that A&E are often baffled by ruptured cysts. Because it has ruptured it probably won't show up on any type of scan. Emergency surgery would achieve nothing especially in the wrong hands. The most they can do is provide pain killers and tell you you have IBS or it's in your head (sorry, feeling cynical today!)
Is your temperature elevated at all? If it is that could signal an infection as a result of the rupture and you need to attend to that immediately.
The pain going down your leg etc. is most probably nerves being pressed on by the cyst.
With regard to it happening again, you might be lucky and escape this type of episode until your op. But cysts can refill and rupture again. You can have more than one cyst too. They generally rupture early in a period but can occur at any time of the month. Some gynaes only drain them but they refill so they need to be cut out.
My cyst ruptured last night and it's the third time in 4 weeks. Surgery time for me!
Remember, it could be something else but on balance I'd guess ruptured cyst. See how you feel and get it checked out in case you think it could be your appendix etc.
In the meantime, take it easy and be kind to yourself. You are likely to feel very tired so give your body time to recover. Take care and steer clear of the pill! x
Thank you. I'm suspecting this too. I was diagnosed years ago but have never had a chocolate cyst - I don't know if one could have formed since December, as there was nothing on my MRI. Still, that pain is totally gone now and it does seem like something happened which has now stopped, so I think that's the most likely explanation. I suppose it could have just been a small regular cyst.
Years ago, before my pain was properly controlled, I used to end up in A&E about once a month since I would collapse due to pain but haven't had to go for years. They're so useless that I'm reluctant to go - I was considering it yesterday, kept taking a bit more oramorph and thinking I'll go if it doesn't help in ten minutes, but then it knocked me out for a couple of hours and when I came round it was gone. I realise now that was pretty stupid, it could have been an ectopic or all sorts, so if it happens again I will definitely go.
I don't feel like I have a temp or any other sign of infection but am keeping an eye on it and will go to the doctor if anything happens.
I'm used to severe pain during periods (I get pain every day but the first day or two of each period is getting worse every month) but this was a whole new level. Hoping it was a burst cyst because then it shouldn't come back! I really don't want to go back on the pill but the way things are worsening each month, I'm getting concerned about the damage I could be doing with every period. Then again, my cycle is finally regular and the hormonal issues I've had since I came off zoladex in 2009 are finally sorted out. I just don't want to put more hormones into my system but I realise that might not be wise.
I was referred back to my old Endo specialist last year but he has retired so I saw the specialist who has replaced him. Things weren't good then but not as bad as they are now. I said I wanted surgery even if I only had a few months relief, so I could reduce or get off the morphine. He said he wanted to see the MRI results and had wanted me to see his colleague who specialises more in drug treatments and chronic pain management, and then we could decide. The MRI report showed adenomyosis for the first time and that my uterus is now retroverted, but then says there's no sign of Endo or severe adhesions - which is odd, as surely the retroverted uterus must be caused by adhesions as it was normal before. My Endo hasn't ever shown up on an MRI so I'm not surprised about that. I'm just concerned that when I see this other specialist she will say that she thinks another lap is a bad idea (I've already had two diagnostic laps, three treatment laps and a gallbladder op so my belly button is quite a mess). I really want the chance to have a bit of relief, get my morphine down, know what's going on in there and increase my chances of conceiving when we try. If she says no I guess I may as well go back on the pill.
Sorry, that was a huge rant, I didn't mean to go on. Can't believe you're going through this pain multiple times in a week, you must be in agony. When are they going to operate? I really hope they can help. Xxx
Forgot to say, my periods are usually pretty dark red with clots for the first couple of days (rarely ever bright red) but then it's all brown for the rest of the week, so I'm not sure I would notice if I were to pass the contents of a cyst. If you can pass the contents, does that mean it goes down your Fallopian tubes and into your uterus? That's scary as that sounds like it could cause a lot of damage and scarring (my specialist is reluctant to even do a dye test unless it's strictly necessary as even that can cause damage to the tubes).
I'm sure I've heard from other Endo sufferers over the years that passing old blood is a pretty common symptom, but for the life of me I can't remember why.
It's interesting that you think not taking the pill might not be wise whereas my approach is to avoid hormones at all costs! Do what you *feel* is best for you.
Never thought of ectopic. Good point.
Most of the blood from a cyst would go into your abdominal cavity and be reabsorbed by the body. Some might make it down your tubes. I'm afraid I don't know if this might damage your tubes in any way. I managed to reduce my heavy flow of brown blood to a normal, clot free flow of red blood by changing my diet to anti-inflammatory and getting acupuncture. Have a look at peacewithendo.com and also check out her book for ideas to help support your body through this.
I've been unlucky recently and I think it's the same cyst just leaking and rupturing and then refilling. They can refill within the space of a month.
You mention you are seeing an endometriosis specialist. Are they on the bsge list? Check here bsge.org.uk/ec-BSGE-accredi... I've come to learn that even endo specialists have their different approaches. Some can be very drug oriented (often I believe due to finances - cheaper than surgery) and some are very surgery oriented. There are then different approaches when it comes to surgery. Please remember that nobody can force you to do something you don't want. I'm sure you know of the fabulous Lindle on the forum. If not, do check out her post healthunlocked.com/endometr...... and make sure you understand your rights. You also have a right to a second opinion.
The specialist I saw in December is a surgeon primarily, he studied at Harvard and with big endo specialists in the US so I trust him. I think he's now the head of department. The person I'm seeing next month is more focussed on medical treatments, but I don't want to go down the hormonal route again, I've already tried everything. I know that surgery isn't wise if you're suffering from chronic pelvic pain because it will just make things worse, but my symptoms and the MRI findings suggest that the disease is worsening and there will be stuff they can treat. I need to try and get off the morphine or at least get it down, and surgery is my best chance at that. I just hope they agree - I won't let them force me into treatment I don't want, but at the same time I can't make them operate. I did voice these concerns to Mr Becker when I saw him, and he reassured me that me seeing Ms Moore doesn't mean that surgery is off the cards, he just wants to get her opinion and see if she has any suggestions.
I don't like taking hormones, but I also know that every period potentially means more damage and the disease spreading, which scares the crap out of me. Over the years I've tried everything from diet to acupuncture to homeopathy and all sorts - nothing has really made a difference. I also have ME which doesn't help.
My period pain is worsening again now but still no sign of the pain from yesterday - so weird.
I have had the pain on the right side for 6months. I have gone to the er and thry said i have cysts. One ruptured inwas in excruciating pain. Was given morphine and zophran for nausea. I just had surgery done for hysteroscopy and biopsy of the fibroid. Supposed to go on the 27th for post op. I again got the excruciating pain back this month. Im getting tired of living with this pain as it juat about ruin my relationship with my husband. I dont want to go and get a hysterectomy as i just started a new job which took me a year to get one. Im lost.
Maybe start a new thread with any questions you have. You'll have a better chance of people seeing it.
I'm guessing you're in the USA due to the time you posted and you call it 'ER'. A hysterectomy is not a 'cure' for endo but might be necessary with adenomyosis which is essentally endometriosis but located within the wall of the uterus. There are plenty of women on this forum who have had hysterectomies and they still have endo. If you are going the surgical route, make sure you get a surgeon with experience of endo. This link names some in the USA endo-resolved.com/endometri... Also look through that site for good information on how to treat endo by diet and lifestyle.
The hysteroscopy only looks inside your uterus and your surgeon will not have been able to see into your abdomen to see any endo. Fibroids are only very rarely cancerous. They should have removed the fibroid if it was in your uterus and not embedded in the uterine wall. Endometriosis can only be confirmed by laparascopic surgery. Has anyone mentioned endometriosis to you yet?
Look into other sites and books written by women who have overcome endometriosis, ademomyosis and fibroids using natural methods such as food, supplements, yoga, meditation etc.
There are others but these are a good place to start.
As regards your husband, you might want to remind him that when he signed on the dotted line it meant "in sickness and in health". If your illness is causing 'problems' then I suggest that he's the one with the problem and his attitude is probably making you more ill. At a time like this you need his support. Situations like this often make a relationship stronger.
Good luck with the results of your biopsy etc. and start asking about the cysts and endometriosis. I also recommend the lifestyle changes that are covered in the sources I mentioned above.
Hi, I'm sorry you are in so much pain. I had urgent surgery just before Xmas to remove a pelvic mass that incorporated my nerves running into my left leg / groin, causing excruciating pain. Do you think the pain low down could be a burst cyst or at least some activity on your ovary, as you haven't mentioned them?
What I really don't get is why they leave it so long before doing a lap or even surgery! Its definitely something that you should report to your doctor as it may bring treatment forward. I can't believe you have to wait until later in the year!
On the plus side I have had no pain whatsoever since my surgery and wish you all the best for a quick recovery.
Thanks Cazza - what you had sounds awful. It's interesting that it was also causing pain in your leg and groin. My first thought was that maybe it was a cyst but, since that particular pain seems to be gone, if it were a cyst I guess it would have to have burst. I've never had anything more than the occasional small cyst, and my ovaries appeared normal on the MRI scan in December. I don't know how long cysts take to grow.
Thinking about it this morning, I realise how stupid I was yesterday - I really should have gone to the hospital, it could have been a ruptured cyst or ectopic pregnancy etc. If it comes back today I will definitely get some help.
I'm seeing my endo specialist in a month - last time I saw them in December things weren't so bad so we didn't definitely decide on another lap (I've had several so it's a tricky decision) but now I'm adamant I want to try. My last one was 3 years ago and not done by a specialist, and the MRI suggests things are worsening. Hopefully they'll agree and I won't have to wait too long.
I agree with Brownlow, especially about a raised temperature. If cysts burst they can cause peritonitis, inflammation of the pelvic area, which adds to the endo so at least report it to your doctor. The pain I had when my chocolate cyst burst was excruciating even to breathe. I hope you can be seen in a specialist centre for endo as its not just a gynae issue. I had an oncologist gynae surgeon as I was in such a mess they thought it was cancer. It wasn't, thank god, but even then he couldn't guarantee that it had all been removed. Don't leave it til next time Cupcakegirl, make a nuisance of yourself until they do something about it! x
Thank you, fortunately I'm under the specialist team at the John Radcliffe in Oxford - it's a few hours away but totally worth the trip. My mum currently has terminal cancer which spread to her ovaries which is really scary, but she hasn't really had any pain from it. So glad to hear it wasn't cancer.
I think it most likely was a burst cyst since I'm a little sore in that area but no actual pain - the pain was awful, I couldn't speak and was having to focus on just breathing in and out. Thank god I have a good supply of painkillers. I've had times when I've gone to A&E and all they have me was a paracetamol drip when I have morphine at home and honestly I was scared of that happening, but if it comes back I will definitely go. No sign of an infection at this point but I will monitor it.
My appointment in oxford is in a month so I will try to make it to that, I doubt they could move it forward - the only down side to going somewhere so good is the waiting times!
I had that kind of pain before I had my lap in 2011. They removed mass amounts of endo from my right side and pelvic wall. I had constant pain in my right side which travelled down my leg to my knee and across my groin. It would be in differing levels of pain but my period always sent it into overdrive, and as you say it was having to breath to get through the pain and no amount of drugs worked to relieve it. Eventually the pain would ease after a few hours. At this point it affected my bladder greatly too - feeling like it was a UTI but it would go away within a few hours.
I had a large cyst on my left ovary which was removed in 2008. It didn't rupture but it would twist around and the pain that caused was phenomenal.
All the time through these pains I had a few days of bleeding from my period and the rest of the month I would have the brown blood lightly - I was constantly bleeding.
Just a few suggestions to what it could be Cupcakegirl but can your GP not get them to get a move on with your appt? My GP was great. I was in so much pain he phoned my consultant and I had an appt within 2 weeks and that was through the Nhs!
Thank you - that's very interesting. I would have thought if it was endo then the pain would continue, but in that case maybe there is just a lot of Endo there. There's obviously something going on but goodness knows what. I will call and see if I can get my appointment moved but they're so busy I highly doubt it. I'll have one more period before the appointment so hopefully that won't be as bad. Fortunately I don't bleed between periods but they last 8 or sometimes 9 days and last month my cycle was only 24 days, there's just so little time between the horrific pain.
I have low right side pain every day, sometimes it moves to my left side but thats once in a blue moon! The first time I ever experienced pain from my illness I thought someone was ripping my insides out with a knife, mine tends to travel down my right leg aswell, and around the bottom of my back. Where do you usually get your pain? I don't know much but maybe it could be a cyst? Or endo spreading maybe? Good luck with your op, sending you hugs xxx
Thank you - my pain is generally low down and central (I think this is the adenomyosis which is in the muscle of the womb), with stabbing rectal and vaginal pain. I do sometimes get a bit of stabbing pain on the right, and in the last month or two I've had this occasional right side pain where pressing on the area would hurt, I was worried it might be my appendix but it would pass. The other weird thing I've had is pain around my lowest rib when breathing in and out, about a week before my period. Basically I'm falling apart!
I'll see what they say when I see them, or if it gets that bad again I will get some urgent help. Thanks again x
The tender area you talk about sounds a lot like a ruptered cyst. I've always had this too, and an mri showed small cysts around my right ovary. Sometimes i feel like that too, but I think we are all so lucky to have each other on here!
Hope you get some answers soon, good luck and let us know. Xxx
I am so sorry to hear about your situation but I have had the same pain on an off for years. I was admitted to hospital about 10 years ago when it first struck and forced me to crumple to my knees. After 10 days of testing and observation I discharged myself as they couldn't give me to manage the pain and just rolled a screen around me when I started rocking. It went as suddenly as it began. After several recurrances in recent years and another set of tests they have at last identified endo and have suggested a full hysterectomy due to location.
It was like going from nought to last stages of labour in seconds without pain relief - it literally took my breath away. At the moment the pain is rumbling and I live in fear of the next full blown episode which can last for anything up to 10 days of no sleep and no respite.
Endometriosis and similar problems are difficult to see, even when the doctors have an idea of what they are looking for as the condition can hide. Keep at them until they find something.
Thanks Linda. I've been dx with Endo for 11 years now, and they found adeno on an MRI in December - I am constantly in pain but this location and severity is a new one on me. Hoping that it was a one off, frankly!
Okay, I'm kind of terrified right now - ordinarily I change my towels about every 3 hours. I last changed it not long ago (can't remember when exactly), just gone to the loo and have flooded really badly, the entire towel front to back is covered. This is really unusual for me - I used to have really heavy bleeding and would wear Tena pants at night to stop me from ruining the sheets and bed, but that is super heavy. I'm going to check on it again in half an hour - should I be worried? The pain has increased again - not the same kind of pain as yesterday, just central general pain and some vaginal and rectal pain.
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