New here! I'm still on my diagnosis journey after weeks of antibiotics for suspected PID, that turned out to be not the problem and now all signs point towards endometriosis. Have severe cramps, way worse than any menstrual cramps I've ever had. I've not been through childbirth but I can only imagine that these are like contractions (bent in half, screaming and crying, on all fours wailing).
I've been abandoned by my GP for a extremely long waiting list to see a gynaecologist but that's going to take 12+ weeks and then longer for a lap.
My GP told me to take 2 packs of Rigevidon back-to-back, I'm now 6 pills away from the end of the 2nd pack and I've had breakthrough bleeding, but more worryingly, have passed a decidual cast (endometrial lining, all in one large piece 7x5cm roughly). Can send pics to anyone interested.
Has anyone dealt with this before, should I phone my GP?
Many thanks in advance.
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Sunflower-girl
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Okay, so I had suffered the same cramps Levi's pains as you all of sudden back in august 2018 within 4 days of this pain was admitted to hospital and wa given an transvaginal scan and immediately they found a endometriosis cyst behind my uterus that was the cause of the severe cramps.
I was referred to a gynae specialist and put on the microgynon pill tricycle. The pain stopped when I started the pill. However, on the 3 pack i passed out a residual cast whilst having a 7 day break.
I was then scanned again 3 months and found I had two big cyst in my left ovary too. I would have a flare up of pains every 2 months and could only manage the pain with pain relief by being admitted to hospital.
I was finally put on the long list for surgery. I then referred myself to a BSGE centre which is a endometriosis centre and within 3 months seeing the surgeon he managed to find more cyst and endometrioma in my bowel too, and gave me a diagnosis of stage 4 endometriosis. I read then given a surgery date within 12 weeks.
I had my first lap in August 2019, and it was successful. I was on my feet within 4 days. Walking again within 2 weeks. The surgeon at the bsge centre was amazing. I am glad I didnt let a gynae specialist operate me as they were far from helpful and did not have enough knowledge on endo that they just kept me on morphine for 2 weeks every time I got admitted. I had 9 hospital admissions with the gynae specialist. The moment I referred myself to a endo centre I had no flare up of pain.
Please get yourself referred to a Bsge centre, this can be done by your gp. Go on the bsge website find the nearest one to you. Take a few choices and then go to your gp and tell them you want to be reffere to a endo centre and can they check for the earliest app in these hospitals.
only let a endo specialist operate you. It's been one year now since my diagnosis and I having this lap surgery was a closure in my behalf. No pain can be compared to that of endo. Its horrible.
Thanks for the great advice. I will ask my doctor to refer me to a bsge centre asap, as I really can't keep living with this pain as it is.
I just don't understand why my doctors only did an ultrasound (came back clear) and blood tests and just sent me on my way with more painkillers. I've been like this for a month now and nothing has changed. truly getting miserable. Clearly something else is going on but waiting 12 weeks for a gynae referral isn't doable.
Really good to hear how the lap helped you so significantly, it really does give me hope!
You need a MRI pelvic scan this will detect endometriosis and endometrioma. Ultra scans unfortunately does not detect everything. I was only told by ultra scan that I had one cyst behind my uterus. but My Endo specialist found my bowel was damaged from stage 4 endo. Once your with a BSGE centre you should then discharge yourself from the gynae specialist. I needed counselling to help me get through this at the beginning because I felt the gynae was just leaving me with so many unanswered questions and I felt I was going into depression with it all. But after a few weeks of telephone counselling and doing my own research and getting myself referred to a endo centre I am so much humble about it all. Yes their is some days of twitch pains here and there but nothing longer than a day. No pelvis pain.x
With these Endo Centres, do you have to be at a certain point before you can self-refer?? I mean, do you have to have been suffering for years and be in constant debilitating pain before you'd be able to self-refer?? What's the process - do you just call them and say you want to see them, or what?
Nope, I was told the cyst I had maybe endo in September2018 and was on gynae list upon till may 2019 when the pain was too much, I went to my gp and told them I can't go on life like this, I have had 9 hospital admissions since september 2018 each admission consisting of staying for 1 week in hospital. I get flare up every 2 months and its affecting me mentally and physically. Then they will try and out you off by saying you do know if you refer yourself to another hospital which is endo specialist it can take upto 6months blah blah then they will try and offer you private dont take either. It's best you see a male gp as they seem to have more affection towards you than female.
You do need to Express to them that your endo pain is really taking a affect on your every day life, your ability to socialise as your feeling more fatigue and less sociable etc. if it means you need to blab a little then skip be it. But you must be seen by a endo specialist that's the only way you wont be getting fobbed off by gynae.
Makesure you have atleast 2 or 3 nearest endo specialist centre ready in hand when you see gp. Good luck x
Thanks so much. Really appreciate you sharing your experience and giving me the skinny on how it all works. I'm so pleased to hear you've got respite from such awful pain. x
Your most welcome. This forum itself has helped me too, I can actually relate or ask questions and relate to someone who had experienced similar. I really hope you get a referral to an endo specialist. Endo can be managed by pain relief but that's not long term. Surgery is the only way forward and get it out of your system. Good luck if any advice or question please feel free to ask. x
Update: Went to see a gynaecologist today who was AMAZING! She listened to everything I said and agrees it is endometriosis. We looked at the options including hormonal injections, different pills, etc. and have decided to come off the combined pill, have a period and just have no hormones until the worst of this pain has gone. She is also going to try and bump me up the referral list for the consultant (for possible laparoscopy). The letter my irritating GP wrote indicated no urgency AT ALL, despite the fact I was sobbing in pain in the room, could barely walk and needed help getting up on the bed. Seriously. So hopefully now I will be seen at least a bit sooner.
Then I will be getting the coil (hormonal) with the intention of stopping my periods.
I am honestly crying with how grateful I feel that a doctor has finally listened to me and that we're making some progress. I definitely have mixed feelings now I have finally been told it's endo (although not 100% confirmed until lap) but it's just good to know what I'm dealing with.
My 14 year old daughter has just passed what i think is a whole decidual cast. She is taking microgynor back to back every 3 months then with a weeks break. She suffers very heavy and painful periods which is why they put her on the pill. I have stage 4 endo and it is also a possibility that she may have endo too
I know this is an old thread but i just wondered what the outcome was around expelling the cast. As you can imagine weve not been able to see a doctor due to the coronavirus shutdowns. Any advice would be appreciated x
Hi! Following passing the decidual cast I was immediately taken off the pill (I was told that decidual casts should not be passed with the pill (it’s actually meant to stop this happening) but if your daughter is in the same boat as me, it doesn’t sound like it’s working for her either).
Passing the cast is unusual and holy f*** was it painful but it wasn’t dangerous- however I’m not a dr so I would always recommend getting in contact with yours just to make sure.
Instead, I was given mefanamic acid and tranexamic acid (both non-contraceptives btw) to take- my dr gave me a schedule so I can avoid passing decidual casts in the future. I’ve found this combination extremely helpful- no more heavy periods- so would absolutely recommend phoning your doctor and asking for a prescription to be sent to you.
I will be getting the mirena coil under GA (they attempted to insert while I was awake and my uterus pretty much spammed and it was the singular most painful moment of my life). As above, the pill did not work for me, neither did the contraceptive implant so the coil is the route we’re going in. It’s used as treatment for endo.
I’m still waiting for my laparoscopy, who know when that will be, but with this medication, following an anti-inflammatory diet (could not recommend more!) and lots of light exercise, things are way more manageable.
Feel free to ask anything else, I know this is a super stressful and scary time 😊
thx for your reply. my daughter did say it was extremely painful (maybe what she would imagine giving birth would be like). i rang 111 and they said my daughter needed to be examined by a dr but the gp said they are not seeing anyone. i tried to explain and they just think its likely to be a blood clot but after looking online im 99% certain its a decidual cast. its the shape of her uterus, with a neck, and with two fins at the top which i suspect would go into the fallopian tubes. i cant get hold of the consultant so unsure of what to do
There isn’t really anything that can be done except changes to the pill- but I wouldn’t do this without consulting with your dr first. I reckon a phone consultation would be do-able. However, my GP was the actual worst when it came to this and I’m lucky to have the number of a good gynae who I spoke to instead. A million miles better than a GP. See if you can get hold of your local sexual health clinic?
Also, it’s gross but take pictures of the cast.
For the time being hot water bottles, ibuprofen and avoiding inflammatory foods are the best bet.
These are really rough times so I’m so sorry your daughter had to go through this now.
Hi, I was on the same pill I started this in October and was told to take it back to back 3months then have a bleed then start pill again. During December I felt a huge gush on my underwear no pain so I went upstairs to the toilet to check and there was a flesh. Baring in mind I had no idea what the he'll it was,it was scary. At the time I called 111 and they told me to go in hospital to see gynae who can send this off to the lab. When I got to hospital and after 2hrs of waiting the gynae doctor said they have no clue what it is and that they can not send it to the lab due it being exposed in the air. As I was told to take it in a tissue and not a sterile container.
2 days later I have my gynae app I showed her and I said to her I done my own research and I think this is a decidual cast and also some people have posted pictures of it on Google search with the way it had actually looked on a pad.
She said yes it is a decidual cast and not to worry about it. Its absolutely normal, to sometime have the uterine lining discharge out of the uterus. This is due to the uterine lining thickening during the process of ovulation and incase of getting pregnant. But because I had the pill 3 months straight the uterine lining broken away as it didn't ovulate with a sperms and so it shredded out of my uterus.
She told me I could continue with the same pill as she said it will help in minising the growth of the endometriosis cyst that I had in behind my uterus which I was waiting to have surgery.
since December 2018 I had not had any episode of a decidual cast. I had my first surgery in Aug 2019 and current given the all clear for endo. I started a different in Jan 2020 due my age now being 31 and suffering from migraine with microgynon. I am taking Noriday which is lighter and one hormone pill.
So I would say do not worry to much about the uterine lining discharging itself, its due to the back to back pill not allowing her to have a period. For severe pain before my surgery i was taking codeine. After surgery I used cocodamol for pain relief. I am now currently on no pain relief and just taking noriday pill and getting lighter and 28 day cycle period.
thank u for your reply. its reassuring to hear. 111 did say it would need to be sent off to be tested but the gp is not interested in doing so. im completely understanding that things are difficult at the minute with coronavirus but ive not found them helpful at all. it was very distressing and painful for my daughter and a worry as to if we would be doing the right thing continuing on the pill or not. im not a dr but i know its not a blood clot so ive managed to find an email address for the consultant she was under at the hospital. ive sent her a message along with a couple of photos. at least they can decide if things did need changing and get back to me if necessary. will keep a closer eye on her for now x thank u everyone for your advice x
Yes I found the same about my gp, for 11months I hardly seeked medical advice from them as my gp sent me away telling me that they are not gynae specialist and that they couldn't really help me much apart from giving me prescription pills. Its definitely not blood clot, as you described it. Mine was sent to the lab but it was difficult for them to see as it had been past 24hrs but I had the pictures and it was exactly how its meant to be a decidual cast.
Hopefully you can get a email response back from the consultant I know times are hard but its really upsetting that other patients have been left on the side to deal with our own issues and let's not even start with all the cancer patients and IVF patient who had to stop their treatment due to covid. Surely their should be some normality in the hospital.
Keep us posted. Try and reassure her not to worry about the decidual cast i know its easy said but its OK its just the uterine lining shredded out. x
Hello, I just passed a mass this morning and after showing the photo to a relative who is a gynecologist he said it was a decidual cast.He said is was unfrequent but it is not dangerous.Of course the contractions to pass can be extremely painful. I understand your worry as I spent 4 hours in the early hours of today worrying like crazy.I was diagnosed with endometriosis in January and had been on the pill back to back since then.I stopped it on wednesday as I had an ultrasound scan and the endometrium was quite thick, and the gyne I saw recommended having a 1 week break.
ahh thank u for your messages. my daughter has a break every 3 weeks too. ive not had any replies from the hospital so have started her on the next batch of microgynor. will keep an eye on her for now. i was a bit worried it might be a sign of endo 🤞 its not
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