Bad ‘period cramps’ but no period… want answers

[nakq_95]

Hi, my names Nicole and I’m looking for answers as to why I’m having severe pelvic pain. I’ll try to keep this short but include all the main points. I’ve been on the contraceptive pill you take every day, for around 2 years. During this time I’ve never had any bleeding, not even spotting. Roughly 6-8 months ago, I started getting pains that felt like period cramps, they would either be in my lower stomach, or where my ovaries are. Sometimes it is so painful I feel like I can’t breathe or talk, I have to stop what I’m doing until it subsides, it lasts between 5-10 minutes usually. On one occasion it was quite bad, and I had vaginal spotting, but that hasn’t happened since. Stool sample showed nothing abnormal so they’ve ruled out anything digestive/ bowel related. I’ve had an STI screening which was clear. My bloods showed low SHBG (which is a hormone that binds all your hormones together, but doctors say that can be a result of many different conditions so doesn’t help us narrow anything down). I had an ultrasound which revealed one small cyst on my ovary, again the docs said that’s quite common and wouldn’t cause severe ongoing pain. They ruled out endometriosis, PCOS and PID because apparently that would show on my ultrasound. I asked if I could have a smear, was told no and to wait till I’m next due (which is next year). I asked to be referred to a specialist, was told no, they didn’t think it was necessary, and basically to just ‘keep an eye on it’ and try to lose weight (I’m not overweight). So yeah I’m feeling I’ve hit a dead end and don’t know what to do next, but I know something isn’t right. Appreciate any advice at all thank you x

[nakq_95]

Should have mentioned I get the pains on average once a week, sometimes more sometimes less

[Fireflygem]

Hi I am in a similar boat and had a similar thing happen, I was told it was ibs, that the cyst wouldn't cause pain, lose weight etc. Had my womb caterised to combat heavy flow as don't want anymore kids. Went for check up they tried to get me to cancel as doc was in surgery said I was happy to wait so we wait, nurse comes out saying they can't burn my womb today have to be rearranged explained that already happened months ago this was a follow up, so few hours after I see him, cyst is to small to cause pain, it's ibs go lose weight and take some painkillers, change diet, I left crying as I could barely walk and I have worked my way through all types of hormone pills no good for me, the mirena horrid. Hubby put in complaint and asked for a referral to wirral women's hospital they have bent over backwards for me and I'm now on the list to look for endo. Endo doesn't show up on scans especially a ultrasound to look for it you would need a laproscopy ask for a second opinion, until then I'm unsure what medications you can take but you speak to your gp if they are unhelpful you can buy cocodamol over the counter and feminax do a napoxen take the cocodamol 4 hourly and napoxen or ibuprofen inbetween so 2 hrs after this was advised to me after surgery as when the affects of the cocodamol wear off the napoxen take the reins, if that's not possible a tens machine might help. Hope this helps and you get the help you need 😁

[nakq_95 in reply to Fireflygem]

Hi, thank you so much that’s really helpful and I’m sorry you had to go through that. I can’t believe they flat out told me it can’t be Endo when that clearly isn’t the case. This has made me so angry now I’m going to try and get referred to a specialist and ask for a larascopy x

[MyStar86]

Definitely push for a laparoscopy!!! Nothing showed on my ultrasound I had external and internal but laparoscopy showed wide spread endometriosis and I’ve now had multiple surgeries and total hysterectomy all only thanks to the laparoscopy othereise I would of just been left xx if you can afford a private consultation for a second opinion then they can put you on the nhs waiting list for a laparoscopy if you don’t have insurance to pay for the surgery but getting the consultation faster via private then it will speed up your process of diagnosis and ultimately treatment xx

[nakq_95 in reply to MyStar86]

Hi, thank you for writing back that’s so helpful. I’m so sorry you had to go through that

[MyStar86 in reply to nakq_95]

No worries I hope you get the right tests that you need and keep pushing for a laparoscopy. When I went private after an ultrasound which showed nothing he suggested a laparoscopy so he was very on the ball thankfully so it’s worth finding the right gynaecologist and one that specialises in endometriosis would be a benefit. However my initial diagnostic laparoscopy wasn’t by an endo specialist but he did the lap found all the endo theb I was referred straight on to the endo specialist team. Take care xx

[Heartof3]

I had exactly the same. Battled for years, until i had a laparoscopy which revealed Adenomyosis. Endometriosis & Adenomyosis is very rare to see on a scan.

Keep pushing & don't give up. U know your own body 💖

[nakq_95 in reply to Heartof3]

Wow I’ve never heard of adenomyosis. Thank you for writing back to me, I hope you’re ok xx

[Heartof3 in reply to nakq_95]

They call it the evil sister of endometriosis. Have a Google. X

[MMMM0]

My overall circumstances are different but last year I had crippling pain/bleeding/passing clots. Blood tests/internal exams/abdominal & tvus showed as normal. I was referred for a pipelle biopsy but chose to pay to have a hysteroscopy with D&C under GA as the situation was literally unbearable. It turned out that they also had to to remove a huge 2” polyp blocking the bottom third of my uterus. A)it didn't show up on ultrasound & B) polyps are usually painless. So my point is that not everything shows up & you must press (or pay) for further investigation. As the anaesthetist said in my pre-surgery meeting “something is going on in there and the consultant needs to investigate it & try to find answers” Good luck.

[nakq_95 in reply to MMMM0]

Thank you for writing back to me. I’m in shock that they have essentially flat out lied about the ultrasound ruling out endometriosis. I hope you’re feeling better now ❤️

[MMMM0 in reply to nakq_95]

No worries. Recovery took a long time & a lot of worry-the consultant said the polyp was unusually large & caused uterine contractions 24/7 for 3 months.but I’m so much better now,thanks. . And honestly-ultrasounds don't pick up everything so if there are other avenues,pursue them! I hope you get something done soon 😊

[mich in reply to nakq_95]

Yes it has a name when they lie,

Medical gaslighting, it needs to be brought out into the open as it is a form of abuse

[Konagirl60 in reply to nakq_95]

Doctors lie all the time.

[mich]

Keep going back to gp, try and see different gp.

Advise asking for a private refferal to see a consultant gynae colonist. Cost will vary and do research them.

Highly recommend Prof. Janice Rymer.

Very tuned into women's needs etc

Hope you get help soon.

There is something not right.

Even an investigatory laparotomy could help.

Also CA125 blood test to rule out ovarian cancer and a hysteroscopy.

[mich]

Please excuse some words as spell checker keeps changing them as I post for some reason.

Laparoscopy not laparotomy.

Gynaecologist. Not the other....

So sorry

[nakq_95 in reply to mich]

Thanks so much. Don’t worry I knew what you meant! Really appreciate the advice x

[Indianajones]

Definitely ask for a second opinion you have to be persistent. I was unwell during pandemic and was in pain for hours on end, thankfully l had a nurse at the practice who was persistent and after many blood tests got a diagnosis that l had H Pylori thankfully that was treatable with courses of antibiotics.