Ovarian Cysts and Painful Sex

Women's health
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Hi All!  New to this forum, but not to women's health.

My fiance and I have been struggling with some of her women issues for the past 4 years now (we've been together 10 years).  Unfortunately, i'm totally out of ideas on what to do at this point.  A little history here:

4 years ago:

- Started going to local OBGYN, he said pain was in her head and she was not having any pain in her pelvic area.

- 9 months later, he gave her an exploratory surgery.  Didn't remove any items in the area for testing.  Nothing resulted from this surgery.

3 years ago:

- Started going to a Dr. 3 states away (we're in the US).  Dr. started prescribing her everything from oral contraceptives to nerve blocking medication.  This went on for about 2 years (3 months between different medications, sometimes up to 6 months). 

- None of these medications helped.  Pain still continued.

- Started doing pelvic PT (inner vaginal PT).  Requires a specialisted PT partner.  Had to travel out of state to do this.  Eventually stopped due to $$ issues.  Slightly worked, but she needs 6+ months of PT.

1 year ago:

- Started seeing a pelvic pain specialist in same state (3 states away).  Pain specialist recommended removing the uterus.  During the surgery the uterus was removed, a large amount of extra tissue on the backside of the vagina, and ovarian drilling was done (small holes are made in the ovaries to experimentally help control cysts).

- Sex from this point forward has been very tough.  Entry into the vagina is very difficult even with 10-20 minutes of warm-up time.  She has a certain area in the back of the vagina, that if hit... will cause her excruciating pain.  We generally have sex one time every 1-2 weeks now.  Every once in awhile it is not painful for her.

- Ovulation causes her the most pain.  It seems that cysts form during this time which cause excruciating pain.

6 months ago:

- Started seeing a pain specialist for pelvic pain.  Had to travel 5 states away to visit this Dr.  They gave her some pain medication (she previously had none and was mostly bed-ridden until now).  The pain medicine only helped a little.

- Had a procedure done on her lower spine that burned the nerves in the area.  During the "test" procedure she was considered a good candidate for the burning of the nerves.  Unfortunately, it didn't help.  She suffered more pain for a month after the surgery, and now seems to be worse off.

- Due to the cost of all of these Dr's out of state, it has been very difficult to pursue more help.

We are really at a loss of what to do at this point.  It is causing a strain on our relationship (for obvious reasons).  She is in pain all of the time... and i can't do anything to help her.  Live in Montana, which doesn't have many specialists.  She is overweight, which i don't think helps her at all in this situation.  A majority of her weight is concentrated in the belly area, which is likely sitting on the ovaries.  She insists that the medication she takes for Bi-Polar prevents her from losing weight.

TLDR:  We have tried every medication, three different specialists, and a pelvic pain clinic.  We don't have a lot of money since she doesn't work.  Looking for where to go from here.

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Also, never had pain during sex before about 1.5 years ago on penis insertion to the vagina.  Her outer vagina and inner is now very sensitive.  Her nipples are also very sensitive. The doctors have told us that this is likely due to her being overweight.  Estrogen is held in fat particles, so if there are more fat particles more estrogen is stored... which can cause these issues.  Just trying to lay out the facts so that anyone with similar issues can give some info on possible next steps.

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Blimey sounds like you have both been through a lot! I take it they didnt remove the ovaries due to the fact that she is young and they dont want to introduce the menopause yet? If she is getting a lot of cysts still though it may be necessary.

this may not help but with having so many gynae problems some of her pain may be psychological.i am certainly not saying all of it as she has clearly had some pretty bad problems going on or they would not just remove a healthy uterus! But now, with sex, it could be partly psychological.

losing weight will help with a lot of problems. Yes unfortunately bipolar meds can cause weight gain, but you can combat this with the right foods. Sometimes it may be necessary to eliminate something from everyday diet, like white bread and anything with white flour. That can actually help with a lot of problems. People with wheat intolerance can suffer all kinds of pain, so it is definitely worth trying. Also, you will know, but sugar can trigger all kinds of propblems in susceptible people.

She needs some super dooper relaxation and you may need to explore ways of getting her in the mood. I am very tense all the time so cant just have sex whenever. Me and my partner have had to find ways of getting around the problems and finding ways to get in the mood. You need to be as honest as you can with each other. My partner was pleasantly surprised when we discussed what got me going! Lol i have to be honest though if it was just down to me I would very rarely make the effort. I am 47 though and have als had a few gynae problems. I am guessing you two are a lot younger? 

Well good luck, hope you get there!

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Thanks much for the reply Sandy67!  Yes, we are fairly young still.  She started having these issues when she was 25ish.  We are both 30 now.  Most of the doctors will not remove her ovaries because they fear it could cause more issues than help.  Being that her vaginal area is sensitive to touch in addition to her ovarian cyst problems, i'm hesitant to say removing the ovaries would help as well.  Obviously, it would help with the ovarian cysts problem, but i don't expect it would help with the sensitivity of the breasts and vaginal area.  As well, it opens a sleugh of issues with cancer and estrogen replacement therapy.  Most of the time the normal response we receive from Doctors is that she is too young to have the procedure.  (She already had the uterus removed... so that isn't the issue.  Although, funny story, one day a nurse asked to have a pregnancy test done... haha)

Most days for her are spent in bed or on the couch.  We both realize that she needs to be more active, but that is really tough when she is in pain.  It's kind of a catch-22.

I really appreciate the suggestions though Sandy.  Ty.

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I know exactly what you mean! I need more exercise, i have put a lot of weight on and realise i need to lose about 40lb but being in pain a lot means I am bedbound too a lot of the time. I make the most of it on good days too and am really going to look a my diet. I am convinced the bread has an adverse effect on my health! My daughter is 18 and has pcos. She put a lot of weight on too. I told her about the diet I intend to do eliminating bread and sugar so she tried it- blimey shelooks like a different person!!!! She has lost 20lb in the last couple of months and still has a way to go but she is really sticking to it. She has ocd so when her mind gets fixed on something it stays (this has usually been towards negative things, like ruminating, pulling blinds right down, locking doors when she shouldn't be! Lol resulting in me and my son having to break into the house)

well again, good luck! I do hope you find some answers. My partner has bipolar too. I know how difficult things can be x