Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Women's health

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention.

Ovarian cysts/endometriosis. Please help

7 replies

Someone1987 · 19/07/2020 22:29

Hi everyone.

Bit of background: I had my rainbow baby 7 months ago after fertility treatment as have PCOS and rarely got periods. I conceived on Metformin and since my son have strangely had regular periods. Before my son, I had an ectopic pregnancy leading to loss of my right tube.

But since my son I get stabbing/burning/pinching/soreness around my pelvic area, where my ovaries are. It's worse on the left side (where I have the remaining tube). I have had awful PND and bad experiences with the hospital (they missed my ectopic leading to emergency surgery and had a horrible time in hospital with my son) so I have ignored it.

Does this sound like pain anyone else has had?

Thank you in advance. X

OP posts:
Someone1987 · 20/07/2020 11:19

Anyone? Sad

No one ever replies to my Mumsnet posts Sad

OP posts:
Hellbentwellwent · 20/07/2020 11:23

Hi someone,

Congratulations on the birth of your son, I’m sorry to hear that you had such a hard journey to get him though and sorry for your losses.

I’ve had multiple surgeries for endometriosis and can answer questions about ovarian cysts etc. What would you like to know?

Someone1987 · 20/07/2020 19:10

@Hellbentwellwent hi, thank you for replying and for your kindness. I really appreciate it Flowers

If you don't mind answering, I was wondering what your experience was like of the pain for endometriosis and/or ovarian cysts and is there a difference between the pain?

Thank you so much x

OP posts:
Hellbentwellwent · 20/07/2020 19:53

I’m happy to answer anything, I’ve been on a long journey with it, took years to get a diagnosis so I’m really enthusiastic about women being vocal about their pain to doctors and not accepting brush offs!

I had really bad ovarian pain towards the end of my endo journey, not so much at the start but any specialist will tell you that your pain is very individual and bears no relation to the severity of Endo. Endo can be stage 4 and cause no pain or be stage 1 and excruciating so ANY level of pain is worth investigating.

I started off with really heavy periods, flooding, massive amounts of pain etc etc i had a diagnostic laparoscopy when after years of anaemia and going to the gp for pain and heavy bleeds and being fobbed off we had investigations for infertility. That lead to a diagnosis of stage 4 endo and I had a radical perineal excision to clear out the endo followed by 2 rounds of ivf and the birth of our twins.

The ovulation pain started after about a year after the twins were born and gradually got worse along with symptoms of adenomyosis, which was a heavy feeling in my pelvis, hip and radiating leg pain. The ovulation pain started as a dull ache and eventually progressed to the point it had me on my knees. I had left sided pain, so every other month I was in bed for two full days with a heat pad on my back and a hot water bottle on the front and on the strongest cocodamol going and tramadol. It was awful.

I gave eventually gave in and went back to the surgeon who had done my initial excision and begged him for a hysterectomy, best thing I’ve ever done, but I appreciate that was fairly scorched earth approach! Luckily as he’s done my first surgery he knew how bad my endo had been in the first place, it was a 6 hour surgery with lots of complications, so he really listened to me and trusted my instincts.

My first Surgery he removed removed some affected ovarian tissue but at that point as we were trying for the babies he operated conservatively to try to maximise my fertility, second time round that wasn’t a consideration for us as we were definitely done with babies, so I wanted him to concentrate of reduction of pain, hence the whole lot out.

whereiwanttobe · 20/07/2020 21:01

Hi @Someone1987

I had a hysterectomy at 47 after years of painful, heavy periods with uncontrollable flooding, time off work because of that (could not be out of range of a bathroom despite super absorbent tampons/pads in tandem) and awful pain in my lower abdomen, which at times felt like a knife being dug into me.

I started with the usual drug treatments, then an endometrial ablation which worked really well to control the heavy bleeding for a few years. When the bleeding got worse I had a second one, but that only lasted about 18 months. Then the pain really kicked in, it could take my breath away. A scan showed a mass on my ovary and I had raised CA125. My consultant was fairly sure it was endometriosis but I had had enough, and he agreed to do a hysterectomy. It was abdominal as they didn't want to risk rupturing the mass, so quite major surgery.

It was endometriosis, which felt like a blessing given the alternative, but it had colonised both ovaries, so both were removed along with my womb and cervix. Once over the surgery, which took about 2 months, I felt I had a new lease of life. I still take HRT as I went into immediate menopause which was horrible, and I resist all attempts to persuade me off of it! There's no family history of women's cancers so I'm willing to take the slight risk.

Happy to answer any questions you might have?

whereiwanttobe · 20/07/2020 21:01

Hi @Someone1987

I had a hysterectomy at 47 after years of painful, heavy periods with uncontrollable flooding, time off work because of that (could not be out of range of a bathroom despite super absorbent tampons/pads in tandem) and awful pain in my lower abdomen, which at times felt like a knife being dug into me.

I started with the usual drug treatments, then an endometrial ablation which worked really well to control the heavy bleeding for a few years. When the bleeding got worse I had a second one, but that only lasted about 18 months. Then the pain really kicked in, it could take my breath away. A scan showed a mass on my ovary and I had raised CA125. My consultant was fairly sure it was endometriosis but I had had enough, and he agreed to do a hysterectomy. It was abdominal as they didn't want to risk rupturing the mass, so quite major surgery.

It was endometriosis, which felt like a blessing given the alternative, but it had colonised both ovaries, so both were removed along with my womb and cervix. Once over the surgery, which took about 2 months, I felt I had a new lease of life. I still take HRT as I went into immediate menopause which was horrible, and I resist all attempts to persuade me off of it! There's no family history of women's cancers so I'm willing to take the slight risk.

Happy to answer any questions you might have?

Someone1987 · 22/07/2020 05:50

Thank you for the replies, sorry I haven't responded I went to the doctors and was a diaster and currently on a new post about that experience..shame not all users here are as kind as you

OP posts:
New posts on this thread. Refresh page